I want to thank all of you that have written, I truly appreciate your letters!!
Started February 2006 and Updated: October 2nd 2009
the difficulty of getting a diagnosis
Hello and welcome,
My name is Steve Duran, I'm 41yrs old, I started to get sick on June 10th of 2005, I decided in February 2006 to start keeping a log of what I've gone through.
This all started when I awoke with a slight headache, I took Advil with no relief, this lasted for about 7 days and then one morning I woke up and had no central vision in my left eye, I went straight to the emergency room, after the exam they sent me to an ophthalmologist who after checking my eyes prescribed a high dose (1000mg) of solu-medrol for 3 days and tons of prednisone after (180mg a day).
Within a few hours of the treatment my headache was gone and the next day my vision came back, from there they sent me to a neurologist and between the two of them decided I had optic neuritis, which could be the first sign of Multiple Sclerosis, when I made an appointment with my family physician he had already talked with both the neurologist and my eye doctor and told me that they thought I had MS and it isn't as bad as it used to be, of course I know different now. They also sent my blood to the Mayo clinic to be tested for Neuromyelitis Optica or Devic's disease (scary stuff) as well.
I went in for some blood test including a thyroid panel, but never heard back so I figured they came back normal, now thinking I had MS, I was sent in for a spinal tap which revealed no signs of MS, also had my first CAT scan and MRI which showed no lesions. But did find a micro adenoma on my pituitary gland, was told it was no big deal?
About a month later the headache came back, it was so bad I couldn't get out of bed, I went back to the solu-medrol drip, once again my headache was gone after going home and napping for about 4hrs, but after tapering the dose with prednisone I developed double vision, they sent me back again for another spinal tap which like the first one revealed no signs of MS, I went in for another MRI and they found no lesions or any other type of problems except for a small growth on my pituitary gland and swollen eye muscles, My double vision lasted about a month the first time.
The eye pain was coming back quickly after the prednisone taper and have been prescribed around 5 or 6 solu-medrol treatments over a period of about 9 months, between the solu-medrol and the prednisone I've taken about 31000mg of those drugs, of course the sleepless nights, sweating, shortness of breath and muscle cramps have taken it's toll on me, now I have a hump on my neck and a hip that hurts when I stand for just a few minutes, of course this is better than the headaches even though 9 months later I still get them, still on prednisone. We'll see what this stuff does to me in the future.
During this time I was fighting major depression, thoughts of death were the only thing I thought of, there were times I could not even lay in bed as soon as I hit the pillow I thought I would never wake up, it was the worst time in my life, something as simple as sleep could cause me to go into overload, my thoughts were really bad and I thought about suicide from time to time because I didn't want to live this way forever.
December 2005 went to the emergency room, felt like I was having a heart attack, heart was beating fast, when I arrived there my blood pressure was high, my heart rate was high also, had a chest CT and everything looked normal.
Well after ruling out MS my neurologist and eye doctors now suggests that I have Pseudo tumor Cerebri, which is a false brain tumor, I read up on Pseudo tumor and one of the ways people were getting relief was by weight loss, I asked my neurologist about this and he too said weight loss did help some people, well I took it to the extreme wanting this to go away I started dieting and walking every day, sometimes a 3-4 times a day, I ate salad and a small piece of meat, then I cut out the meat, I was eating 2 salads a day with fat free dressing and after about 24 days of dieting I cut out the salads, I was now forcing myself to eat a cracker, and I mean force, it made me sick to eat at all because I would not lose weight I ate1 cracker a day for about 5 days, it got to the point where I quit eating because the thought of living with headaches and pressure in my head scared me, it was strange time for me since food was a great thing in my life and towards the end my body didn't even miss it or have a need for it.
After losing 42+ lbs in about 5 weeks I found myself in the ER getting IV fluids, I was dehydrated and was told by the doctor I had to eat because I was killing myself, during this time I was on Diamox to reduce the pressure and cerebral fluids by up to 50%, which at first seemed to help, but then I had my dosage upped to 500mg a day with no avail then to1500mg a day still nothing, this medicine is apparently not working for me, the headaches were back, my double vision was worse and now I had photophobia (intolerance to bright lights) so this made wearing sunglasses and dimming my monitor on the computer the only choice I had, the photophobia lasted about a month and the double vision went with it. With my eye changes (dry, gritty, puffy, flashing lights)
My eye doctor said that it’s looking like you might need a good endocrinologist, I'm glad she said that because it was the first thing someone had said that was correct at the time.
My hormone levels came back low the first week I went to see my doctor in June, I found this out by reading about the test results and nobody ever said a thing about them, I relied on them to find a problem and they overlooked my thyroid, My TSH came back at .03 and my T4 was above normal, I went back into the lab for another check and the TSH was low and the T4 was high, Hyperthyroid?? With opthalmopathy (TED) could I have been suffering all this time with a thyroid problem? my grandmother has Grave’s disease and was treated with RAI a couple years back and my aunt has hashimoto's (hypothyroid) I also have an aunt and uncle on my dad’s side who have thyroid problems as well. I can't believe that nobody thought this was important, except for my eye doctor. Update: 10/01/06 my grandmother has TED and her eyes are bulging now.
I went in for a thyroid uptake scan and eagerly waited for the results, when they came back it said it was normal, I was disappointed because every test seemed to be a dead end, but they did say it could be a false normal due to all the iodine from all the CAT\MRI’s I’ve had in the past few months, my doctor says he wants to see me back in 2 months, of course my response was WHAT!! I take atenolol to slow my heartbeat down (helps with hand trembles a little bit) I'm taking prednisone for the headache-eye pain problem, can't sleep, feel like I'm going 200MPH and you want me to live this way for another 2 months, the doctor called back and ordered a thyroid ultrasound, a week later I went in and had the scan done, we still don't know if it's grave's or some other thyroid disease so until then I wait.
I've been getting so many MRI and scans and every time they give me Iodine contrast. good thing with a possible thyroid problem. Of course with my doctor I only get 10min of his time if I'm lucky, half the time he's a half hour late and walking out the door while I'm still talking to him. The Vancouver clinic moves you through like your in a herd of cattle.
My neurologist after running out of guesses of mystery diseases suggested that I go to OHSU to see a doctor at the Casey Eye Institute, my eye doctor also thought that was a good idea, I received the referral and made the appointment, I picked up my MRI's and brought the scans with me, which I'm glad I did since my neurologist didn't send anything over!! it took weeks to get the full medical file, the doctor at Casey Eye took a quick look at my scans and said you don't have pseudo tumor cerebri, if you did your optic nerves and muscles would be swollen and mine looked normal....even though slightly enlarged, so back to square one!! She too thought it's a possibility that it could be thyroid eye disease, but was puzzled since those inflicted with TED don't have major pain and headaches which seem to be the hallmark of my illness.
I've had no insurance throughout all of this and live in a country that does not help its own people, I was told by the state of Oregon that if I was an immigrant with a child they could help, but there is no help for me, I was lucky enough to get patient assistance through OHSU though...Thank You OHSU
Feb 14, 2006
Getting tired of testing!! but it needs to be done.
Feb 16, 2006
Doctor called today with test results of the ultrasound and there is a nodule on my thyroid that is causing my problems, I am getting scheduled with a new doctor to do the biopsy, my doctor said I don't have grave's disease because the thyroid uptake scan was normal? so it's just hyperthyroidism from an overproducing nodule? My antibodies test came back at 96 when most people don't have any and people from families of thyroid problems are at about 20-30, so mine are high which is suggestive of Grave's disease. My endo gave me Tapazole for my thyroid and now more blood tests but no biopsy.
Feb 28, 2006
Went to Vancouver Neurology today, Dr Herzberg is sending me in for an X-ray to make sure my hips aren't getting bad because of the high doses of prednisone over the last 9 months.
March 1st, 2006
Went to Vancouver clinic today due to nose bleeds, been having at least 2-3 a day for the last 3 days, they had to cauterize a vein in my nose and so far I've not had anymore... I had this when I was young....... also was fitted for a nasal pillow for my sleep apnea at the Vancouver sleep center. Much better than the full face mask. I survived that horrible night at the sleep center. if you've been through a sleep study I feel for you, I was so hyped up on prednisone I couldn't sleep well but we made it through.....I take Ambien CR and Lunesta to sleep.....Lunesta is better.
March 8, 2006
I've dealt with this for the last 10 months and it continues with the eye pain and daily eye changes, and in debt to the tune of about $30,000. And still going.........
Had another MRI that showed you guessed it NOTHING!! except the pituitary growth, Some unknown inflammatory disease? still on prednisone and now Tapazole for my thyroid, my headaches are gone for the most part, but my eyes change day to day, burning, itching, watering, dry, wide stare and a dull ache, with that I have muscle and joint aches, sometimes it's hard to just stand up, my arms are weak, my neck hurts, and shooting pain just about everywhere, there are days I don't feel well at all but the next day is usually better (most of the time) it’s been an experience to say the least…..but I’m still grateful for the life I have. Still taking Lexapro.
May 18th 2006
Well now I’m tapering my prednisone to 9mg a day this week and 8mg next week… by that time I should start a new drug called methotrexate this is to help with the unknown inflammation???…. Still hurting all over but what do you do? I’m waiting for a medical review from OHSU then hopefully they’ll get me scheduled to see an endocrinologist. At this point I don't know what kind of doctor I need.
May 24th 2006
Kelly Ripken had headaches and was diagnosed with Grave’s disease? could it possibly be so simple? I truly hope that all of my problems are thyroid related, just for the fact there is no other explanation medically through blood tests, CAT scans and MRI’s, the one fact I do know the blood tests for my thyroid and ultrasound show there’s a problem.
Going for another test today!! Now checking for TB, I don’t have the symptoms of tuberculosis but they want it checked.
May 25th 2006
The referral came through for the OHSU Endocrinology clinic, have an appointment in July!! Down to 7mg prednisone and headache is coming back, eye problems still come and go, dry, gritty, sore and tearing, but getting by, some days I feel like I want to die, and now they said one of my x-rays showed an enlarged heart….just another sign of a thyroid problem?
May 26th 2006
Test was negative for Tuberculosis!! Headache is lingering around but still able to live with it at this point, I have slight double vision when looking down, but nothing major yet?
May 29, 2006
Shooting pain in my left lower arm, upper left shoulder, right arm, eyes tearing, slight eye pain in left eye, eye’s feel irritated, muscles in legs weak, I feel very tired by the afternoon as with every afternoon, but I need to stay up to help sleep through the night.
May 30, 2006
Went to Mt Adams for a day trip, on the way back I started getting eye pain that turned into full blown major eye pain and headache, I went home and tried to lay down but was in such pain, I finally went to the ER at OHSU, they ran tests but could find nothing wrong, they gave me Dilaudid and morphine to ease the pain and were very interested in my thyroid problem. I was feeling much better the next day.
May 31, 2006
My neuro-opthalmologist called and wants me to get labs done today at OHSU and then see her at 4:00pm at the Casey Eye Institute; those are my plans for the day. Went to Casey and my eye pressure is down to 15 in both eyes, the lowest its been for the entire year since all this started. My doctor and her staff have been the best!! I can't tell you how happy I am to have them here as they have helped me through this. If you have eye problems get a referral to Casey Eye Institute.
Everyday is an interesting day, sometimes good, sometimes bad. Not much new to report, been taking methotrexate now and prednisone, not sure if the methotrexate is working yet. I've nicknamed it Deathorexate because its a scary drug. I getting tired, my minds going crazy.
July and August 2006
Still experiencing eye problems but no vision loss, eye pain and headache to be staying within tolerable levels, on prednisone and methotrexate, muscle pain, chest pains, shooting pains all over and weakness are common daily occurrences.
August 22. 2006
My biliruben levels are elevated, I have an slightly enlarged heart now, shortness of breath and most of the time I just don't feel right, I have rear side pains almost feels like kidney pain but not sure, I'll have to ask my doctor the next time I go in. My endo said if the biliruben levels are high on Monday I might have to find another route for my thyroid problem as I won't be able to take methimizole anymore, I can't have RAI either since my eye problems can get worse.
August 24th 2006
Eye pain back, double vision back but only within a foot in front of me anything farther looks normal, my eyes feel restricted when looking around, and are painful as well, been using systane eye drops seems to help with the feeling of something in my eyes. been experiencing fatigue, nausea and muscle aches. emotionally I feel like I need anti-depressants again... this roller coaster ride it's taken a toll on my mental health, I try to look at things with a positive attitude but I fail miserably at that most of the time.....my mind plays games with me and even though I try not to think about it.. I always feel like today might be my last day.
August 27th 2006
Eyes are constricted, shooting pain above my left eye, double vision worse to the right, when looking right I get nausea, feeling tired today since not getting enough sleep. My nose is sore not sure why but it could be from the nasal pillows for my cpap machine. Chest pain, muscle aches and head pain still going on.
August 28th 2006
Not feeling well today, tired, worn down feeling, went to OHSU for blood tests this afternoon, its methotrexate day but I took it at 8:00pm, took a nap for a few hours woke up with a major headache.....I hope it goes away
August 29th 2006
Headache most of the day, it comes and goes, feeling tired, could be the methotrexate, eyes are double to right, up, down and about a foot in front of me. Dr Vanek says my TSH levels are 1.6
September, 2006
Some days I feel good others I don't, nothing has changed, eye pain, intermittent headaches, sweating, pain all over. I'm sure I could have added more this month, just don't feel like writing about all my problems this month. however I sold most of my computer stuff, servers, rack, stereo equipment...loosing interest in everything I like to do. I realize that my thoughts about this whole ordeal were that I might not be around tomorrow, I kind of scared myself as getting rid of things that I've enjoyed for years was not a good thing. Depression has set in.
Oct 20th 2006
Still going through, eye changes, head pain (eye pain) but not all the time, still not sleeping well, aches and shooting pains, I've been irritable, sad, depressed, happy....my emotions sometimes are not controllable at all.... my feet and legs have really been hurting, its to the point sometimes I can't walk, not sure what's causing this, something else to get checked out.....I had a tooth pulled about 30 days ago and it's still not healed all the way, any cuts or scrapes turn to scars and it takes forever to heal or quit bleeding. Still on methotrexate and prednisone so my immune system is low.. I'm going to schedule an appointment to see my family physician for my depression and maybe get in to check out my slightly enlarged heart, I just can't afford anymore tests...
October 21 2006
Headache back again!! started at 6:00pm, went to lay down around 8:30pm up at 11:00 then went back to bed. up and down through the night.
October 22 2006
Woke up about 9:00 still have headache.
October 23 2006
Head pain most of the day, been so tired today I got up at 7:30am back to bed at 7:45am woke up about 1:00pm and back to bed I went, finally I got up about 5:30 and was vomiting but afterwards I felt better.
October 27th 2006
Still experiencing slight pain on eye movement, shortness of breath and my feet are hurting so bad, I can't walk sometimes. When I stand up it takes everything I have to get up and I take small steps until my foot pain subsides. Sat in the car for about a half an hour because I couldn't stand up.
November 25th 2006
Not feeling well, slight headache, general malaise, my legs go numb when I stand or walk for more than 15 minutes, my heart is beating to the point I can feel it in my throat sometimes, I feel hot then I feel cold after awhile, shortness of breath is still around, all of my joints hurt and my feet still hurt, upon standing it takes me about 30-40 seconds before I can take a step.
December 3rd 2006
Talked to the doctor this last week, she said she has no answers why I feel the way I do, my blood test show inflammation in my system, wants to send me to a rheumatologist to see why my joints hurt, Still feeling weak.
December 20th 2006
My eyes are hurting really bad at night, when looking to the right they feel restricted, headaches even with the methotrexate. Head pain again but only 3 times today
Earlier today I felt really hot, even sweating, my heart was racing then after about an hour it went away, throughout the day my eye pain came and went, my leg muscles are weak and after standing for awhile my legs start to numb. Muscle twitches in my hands and jaw are driving me crazy, they happen about 1-2 times an hour on average, sometimes they disappear for 3-4 hours then come back, the twitches are mainly in my right hand, stabbing pains in my hands and leg muscles continue daily.
I continue to battle depression and thoughts of dying....I do my hardest to keep everything on track but with all I've been through it's not an easy thing to do, there are days that I don't want to wake up anymore, but my family and friends keep me going.
December 23rd 2006
I feel a little better during the day with only slight headache and eye pain, still hard to walk or stand for longer than 15 minutes, night time is a different story, about 6:00pm my eyes begin to hurt more with sharp pains and my muscles in the arms and hands hurt bad, upper arms feel like a burning sensation when picking things up, it seems like all my joints swell at night time and I don't feel well at all.
December 25th, 2006
Woke up with headache and eye pain, seemed to get better then about 2:00pm it took another course, I became very tired, my eye pain was really bad when moving my eyes in any direction, my left eye was tender to the touch, they were red, itchy and watering, this lasted the rest of the day, I went home about 6:00pm and laid down, my heart feels like it's beating heavily , I woke about 11:00pm feeling much better, my eyes still hurt though, and throughout the day the shooting pains kept a steady pace, going from my arms, legs and feet. Just sitting here writing this my hands hurt and am getting a stabbing pain in my right leg. Calling the doctor in the morning to see what I can do. I disinfected my CPAP system this evening (this is done every 2-3 days)
Afternoon and evening seem to be the worst, for my eye pain, mornings I have double vision really bad then it clears up after about 15 minutes.
January 1'st 2007
Happy new year!! oh yippee, stayed at home, I was so tired I fell asleep about 10:00.
January 8th 2007
Went to the doctors at Casey Eye, for a follow up that is needed when taking methotrexate, I want off this drug as it seems that we don't know if it's the methotrexate, prednisone or my thyroid back in check that's making me feel a little better, went for a cortisol test so we'll see if my body is producing enough? when going in for the test a doctor there looked at my hands and asked how long my fingers have been pudgy? I said about a couple of years or so then she asked about my shoe size and if I have changed them and I told her I always wore a size 13 now had to buy a size 14? being that I had a pituitary adenoma she said I might have Acromegaly which is an elevated growth hormones. So they are testing for that.....I thought now what!! not another interesting problem!! but you know it only takes someone that specializes or has treated symptoms of a disease that they are familiar with to see a problem so hopefully she will be right as prior doctors have never said anything about this even with signs of a pituitary adenoma, but if you don't know what to look for you'd never find it...I would have hoped that between 2 endocrinologist and a neurologist they would have run every test related to hormones. A year ago I know my testosterone levels were low, but they said that was from prednisone? I still think it must be low as my sex drive is zero but???
January 11th 2007
Dr from Casey Eye called and it seems my body is not producing enough cortisol, I've taken a mass amount of prednisone over the year so now I stay at 2mg's for a few more months, of course I was told during my last appointment that I should be off prednisone by now, I'm glad I misunderstood the doctors as my body is going through prednisone withdrawals, you'd think they would have run the cortisol test before lowering my dose to the point that they said I should be off of it??? I'll find out Monday about the Acromegaly test results, I hope the pituitary adenoma that was played off a year ago as nothing hasn't become a problem. Major pains in my arms, feet and legs, shooting all over the place, also been having chest pain and fast heartbeats again, also experiencing times where I'm burning up and sweating then freezing cold. Wrist pain getting worse and hard to walk most of the time. Been staying home more.
January 12th 2007
Eyes feel funny today, double vision is bad when waking up, painful and burning throughout most of the day, using Systane eye drops which helps quite a bit, head pains started around 10:00pm, still have muscle weakness and pain when walking. also wrists hurting bad tonight. Holding at 2mg's of prednisone, 10mg's of Tapazole, 75mg's of Atenolol and a small amount Hydrochlorothiazide
January 13th 2007
Sharp pains on top of my head throughout the day, eyes muscles feel tight, leg muscles weak, elbows stiff, going to bed early tonight. Hopefully feel better tomorrow.
January 15, 2007
12:15am woke up with major head pain....went back to bed and woke up about 8:30am still not feeling great but better, throughout the day I had head pain, was tired and took a nap from about 1:30 to 6:45, headache was gone upon waking, now my gums and tongue are sore with a slight sore throat.
January 17th, 2007
Not feeling good this morning, my endocrinologist called today and informed me not to take prednisone anymore but Hydrocortisone instead, 3/4 of a 20mg tablet per day in the morning, my head feels strange, feeling lethargic, experience ear pain and tired. My eyes muscles are at it again today feeling like they're moving but they aren't. side to side motion is restricted. tongue feels irritated and sore. I hope its not thrush again.
January 18th, 2007
Went to see doctor at OHSU, blood pressure normal which is a good thing since it's always been high, did an EKG and was told it looked normal, also did an ultrasound on a growth on the back of my leg, doctor was not quite sure what it is but wants to have a surgeon remove it as she is unable to at her office, she said it could be very interesting to see it under a microscope, possibly could be related to the other problems I've had. This started as a small lump and has now grown to a golf ball sized growth that is on the outside of my leg.
January 23rd, 2007
Headache was hit and miss most of the day, chest pain was heavy this afternoon, I had to take a few minutes to sit, I was sweating and nausea had set in, felt better after resting and cooling down, major pain in left arm and shoulder, feels like a getting a shot but deeper, towards the evening I was not feeling to well. Have eye pain when looking left and right not as bad with up and down motion. Joint pain and foot pain is the worst!! its hard to stand up after sitting for just a few minutes.
February 5th, 2007
Went to OHSU Richmond today for a dermatologist appointment to look at the lump on my leg, doctor thinks its a Neurofibroma? and want's it removed, but they did remove a small mole and are having it tested to see what it is, it didn't look normal to her, but she wasn't too worried about the lump, I have been feeling real nervous with hand tremors, weak muscles (leg and arm) for the past few days, also my feet once again are killing me, slight headaches throughout the day and my eyes are bad when looking right, the double vision is worse. Oh boy!! it's methotrexate day too. Tongue still burning most of the day bought some yogurt to get the good bacteria in my system.
February 6th, 2007
Sharp pains in both shins today lasted about 1-2 minutes they hurt really bad, felt sick this morning, I can feel my heart racing off and on all day, weak muscles in my arms and wrists. Major pain from my wrist to elbow.
February 7th, 2007
Didn't feel to great this morning, then around 2:00pm I started to get major head pain and my left eye was sore and tender, I took a nap from 5:00 to 8:00pm and still had the head pain upon waking. This is the type of pain that I experienced early in my medical condition that required major doses of prednisone to control, feeling nauseas and generally not well. Seems that hydrocortisone is not as good as the prednisone as my headaches seem to be coming back, also it seems that methimizole might be making me not feel well too but not sure.
February 8th, 2007
1:00am still getting sharp pains in the upper left side of my head and temporal area, I'm very tired but can't sleep. my legs and feet are so sore it's hard to walk. Still feeling nauseas. I have a Dr appointment this morning at OHSU.
February 15th, 2007
Feeling better, sharp pains not too bad and seem to be going away, legs feel weak and when sitting or standing for a few minutes my legs go numb.
February 24th, 2007
Eye pain is back!! hurts to look left, up, down, not so bad to the right, the last few days my eyes have been sore but today it's killing me, it feels like there is something in the back of my eye that's cutting into the muscles.
March 8th, 2007
Feeling nervous, tremble in hands and arms, eyes hurt when looking to the right now. Chest pain comes and goes, I don't know what it's caused from so who knows.
March 12, 2007
Arm pain and sore joints, legs feel heavy, pain in feet again!! hurts to walk and seems worse when sitting for a few minutes then standing back up, I can tell when I don't take my methotrexate, I was sick and had to skip a dose to help my cold, but the headaches (eye pain?) go crazy!! I hate those sharp pains by my eyes they are the worse thing to experience. Side pain in my lower left and right side back was unbearable for about 15 minutes today, I get this sometimes, but usually not this bad.
This evening I was laying in bed and all the memories of when this illness first started hit me, I smelled things that reminded me of being up all night from the prednisone infusions and not knowing what was going on, then when I walked outside to the car to get my hydrocortisone prescription, the cold air and wet sidewalks reminded me of going to the ER early in the morning, I am trying not to let this get me down, but the last time I felt like this I was put on Lexapro, I hope that taking Amitriptyline will help, I take this every night to help sleep but it seems to help a little with the depression too, but sometimes I forget to take it and can't sleep well, My double vision seems to be very bad when I get tired, so I'm off to bed.
March 21st, 2007
Went to OHSU to get a test to see if my adrenal glands are working since I've taken so much prednisone......they take your blood, give you a shot of hormones that make your pituitary gland stimulate the adrenal glands...then they wait for awhile then take blood again to see if they're working......well my endocrinologist called back and said no luck and that I still have to take hydrocortisone for another 3 months!! I take 10mg's every other day.
March 24th, 2007
It's been a few since I added here, but things are the same, pain, hurts to walk, joints feel swollen and stiff and getting sharp pains in my head when leaning over, shooting pain- in arms, knees, legs, feet, lower back, side, chest and wrists....this has been going on for a few days now!! and is getting old, after sitting for a few (about 10) minutes, its hard to get up and walk, having to take short steps until I can walk fairly normally......getting pins and needles feeling.
March 26th, 2007
Took methotrexate the other day and now I don't feel good.....tired and just don't feel well, shooting pains are like a pinball in the machine going all over the place, weak muscles in legs and still having trouble walking. I have an aunt and uncle that have been diagnosed with fibromyalgia?? my aunt has Hashimoto's too.... It seems I can't sleep without taking Amitriptyline, I tried last night and was up every hour, I was using my CPAP but finally took it off to see if I could sleep better but no luck..... eye pain when looking up, down, left and right seems bad today, it's crazy since in changes by the week. Going to see another doctor at OHSU to look at the lump on the back of my leg, they want to make sure it's not cancerous. If it is then I can't take methotrexate anymore.
May 1st, 2007
I haven't been feeling to well and have not been updating like I should, today is just another day of burning pain that seems to be lasting longer, they were sharp pains but disappeared rather quickly, now they are lasting up to a few minutes, I still have sharp stabbing pains in my head, that started a few days ago...On Friday I was feeling weak and tired....couldn't get enough sleep but felt better Sunday.....
May 18th, 2007
Been tired and can't get enough sleep, slept most of the day and still ready for bed....joint pain and shooting pains are killing me, they don't stop, hard to get out of bed, takes about an hour or so to get my joints to loosen up, throughout the day I suffer shooting pains and unbearable joint pain, hard to walk around.
May 20th, 2007
Shooting pains in my shoulder are getting more vicious, joints are sore, limited movement of my eyes (left and right) eye pain and headaches are back again!!
June 3rd, 2007
When taking hydrocortisone I don't feel well after taking it....my stomach seems to get very bloated. Everyday I go through changing eye symptoms, some days are better than others but for the most part they feel sore, looking to the right they don't focus correctly, my eyes feel the best after getting up...by early afternoon when I get tired, I have to focus them as they want to see double...I also feel they get irritated more in the afternoon. My joints are killing me...my back is so sore in the morning now, so sore I lay there for about 30min just trying to get up, my feet, wrists, fingers, elbows and knees are sore too, especially after sitting for a few minutes, it takes a few to get them to loosen up. For the past 5 months it's been hard for me to stand or walk for more than 10 minutes, my joints hurt and then to make things worse, my right leg numbs up and tingles....it gets to the point I could probably stab my leg and not even feel it...so who knows what that is. My shooting pains are still around, the center of my hands, my right foot (large toe) upper legs (left and right) and middle of my arms are the worse....my head pains come and go day to day, but when they start up, watch out those pains are the worse. I am waiting for OHSU to get the help that I need to go and see my doctors...its been awhile and I need to be seen, for blood work and need something I really never used...pain medication to help deal with the daily pain. Still using CPAP at night but I need to get a new face mask now that the one I have is almost a year old and not fitting too well.. that's all for now my left hand is getting stabbing pain...that tells me it's time to get off the computer.
June 7th, 2007
Still getting sharp pains in my head, left side. These pains are horrible and sharp, very sharp!! eyes hurt when looking to the left and right. Joint pain still hurting.....called doctor Tuesday to see if I should have blood work done because of the methotrexate but no one called back? I'll call again tomorrow, left a message with my endo and his office called back...setting up a time for the cortisol test...we'll see if my adrenal glands are working or if they are permanently damaged.
June 11th, 2007
Going to OHSU today for an eye doctor appointment, Friday I'll be back for the cortisol test and blood work for the Methodeatho.
June 15th, 2007
Went in for the cortisone test......bet there's a problem still.
June 19th, 2007
Doctor called and said to stay on hydrocortisone, Tapazole.....I see that my adrenal's are still not waking up!! go figure. Not much to add just feeling crappy still. Cutting hydrocortisone to 5mg's every other day instead of 10mg's
June25th, 2007
Horrible twisting pain in my head!! been worse since cutting hydrocortisone back to 5mg's every other day. Pain in joints seems a little better lately but not much.
June 30th, 2007
Been having horrible headache and the side of my head hurts, even to touch my skin on the right side of my head brings pain and tenderness. I will be calling some? notice I said some doctor since I have no idea what doctor to call? all the specialist always say call my primary care family physician but I don't ever get anything from that....just " If the specialist can't figure it out what am I supposed to do for you"....that's the feeling I get from her anyway. Chest pain galore this last few weeks...but then it goes away so I guess that's good. Joints are sore and my wrists now are preventing me from being on the computer as much as I was. My memory is not too good today......simple things I forget and words that are simple to spell are now things I have to spell check....even typing is getting difficult as I forget where some keys are.....
July 5th, 2007
Woke up about 6:00am had terrible sharp pains bouncing between my temple area, went back to sleep and got back up about 2:30pm, it seems ever since they lowered the dose of hydrocortisone these sharp pains have been happening more frequently....my heart has been beating oddly and I just don't feel up to par at all!! I do notice that when I have these sharp pains my eyes are restricted as well. I called my endo to see what to do if they want to raise the hydrocortisone dose up or what...I can't live daily with this pain so its either more cortisone or pain meds, either way it's not good. My endo called back and now take 5mg's a day instead of every other day.....I hope it works
June 10th, 2007
Went to see the rheumatologist he is testing me for rheumatoid and for lupus. He tells me to lose weight to help with the lower joints and to get exercise since I've been detuned over the last few years......I told him that It's hard for me to walk, my legs go numb and the next day I pay for it dearly in pain...his response is it's going to hurt!! yeah no kidding.
July 11th, 2007
I have been feeling bad this last week, I've been experiencing head pain, eye constriction, feeling blah to say the least, chest pain and now have a problem hearing in my right ear... voices on the phone sound digitized, I hear an echo when listening to music and TV and it's driving me crazy....I'm losing this battle since all this has taken it's toll on my mental health. I don't want to die but there are times when I lay down I feel like this could be the day I don't wake up....my doctors have failed me with one guess after another.... my endocrinologist that says your TSH levels are fine...well Mr. Endo why do I feel like crap still, racing heart, feeling hyper, apparently I know I don't feel good since the levels are quote normal? seems the answers are here's another medication and some more tests.....screw that where's the pain meds that I never asked for throughout this ordeal, but I need help get me through the day since nothing else is working.....even the prednisone is not helping anymore!! it's coming back!!!
July 16th, 2007
This has been a very bad last few days....I feel so bad, weak, tired and I don't know what doctor to talk to.....
July 18th, 2007
Called doctor and asked about the blood work done for rheumatoid and lupus!! Negative!! of course I only spoke to his assistant who did not know a whole lot except the blood work was fine....It's a good thing I guess to know it's not lupus but what the hell is it? I know over a year ago my testosterone levels were low, my thyroid is screwed up and I have a micro adenoma on my pituitary gland...... when my illness started my eye doctor said I could use a good endocrinologist....maybe I still do....my endo only runs TSH tests, not T3-T4 or any antibodies tests......he occasionally runs a test to check my cortisol production but that's it!! I think I need to ask my family care provider to run a complete thyroid panel, antibodies test and testosterone test.......I guess I'll have to get pushy again and demand tests or find another doctor who will run them. I'm sick and tired of the "let's see what horrible disease we can think of to test for" theory......check with the obvious and go from there!! If you had to change your endocrinologist let me know and for what reason. Thanks, Steve
August 18th 2007
On Friday the 17th 2007 my usual daily head pain turned into a full blown headache that required me to go the ER, the pain was so bad!! they gave me Dilaudid, Benadryl and some med for nausea....got home this morning about 7:00am and went right to bed....I woke up this afternoon feeling ok but the head pain is still lingering around....its much better this afternoon but the pain comes and goes as it does everyday...still tired after sleeping all the time.
August 29th, 2007
Been feeling bad...tired and weak....also the head pain continues.....my eyes are still changing, even though my left eye seems to be returning to normal, its not sticking out as much...but the pain still gets me, still dealing with double vision up close all gazes and pain on movement, it's sometimes difficult to read my computer screen because it keeps getting blurry, I constantly have to blink my eyes to refocus. My right ear is acting up again....I'm losing hearing in that ear, everything has a zzzzz sound to it and it drives me nuts also the sound is muffled. Joint pain continues to be an issue and chest pain remains almost daily. Leg numbness, shooting pains all over (legs, arms, neck, feet, knees, hands, elbows, fingers) it's just all over the place, there is no relief it just happens and happens all day long.
September 10th, 2007
Headache, eye pain, blurry vision......this is my life. I'm so tired today, I woke up at 1:30pm and am still tired, I'm going to bed early tonight and hopefully the headaches and eye pain will be better tomorrow....so much for the methotrexate and hydrocortisone...... could all of this be MS? I'm starting to wonder if this wasn't called correctly in the beginning?
October 2nd, 2007
Been having head pain off and on daily....right leg going numb when walking short distances 60ft or so...or standing for more than 5 minutes......tired in the afternoons and my sleeping pattern is not so good, I usually go to bed around 11:00 or so and am up and down most of the night and then when I need to get up, my joints are stiff and the pain in my back is bad.......upon waking up my eyes are fighting to stay focused and double vision is seen with little side to side of my eyes, the double vision clears up within an hour or so and goes back to far left right and extreme up close.
October 3rd, 2007
Head pain on right side today....eye pain was in right eye as well.....towards the afternoon I became tired and felt dizzy almost to the point I thought I was going to be sick. The dizziness lasted about 2 hours. In the later evening my legs were sore and weak. Trembles in hands are prominent this evening as well as the rapid heartbeat
October 14th, 2007
Saturday the 13th was the worst day in along time, I was in terrible pain, head pain, joints were stiff and all I could do is sleep, and not good sleep either. My joints are jelling badly after sitting for just a few minutes. neck pain has been bugging me for a few days now and my chest feels like it was run over. Everyday this seems to be getting worse, I can't walk more than 30ft without having leg and foot pain....standing or sitting too long causes my right leg and hands to go numb.
October 16th, 2007
Today it's heart palpitations and sharp pains in my legs and left hand. Talked to my endocrinologist yesterday and I got the usual....oh are you still taking anti-thyroid medications? lets see when you stopped them...hmmm not sure can't find it in my notes...duh you never told me to quit taking them.......then I say should I get blood work done...he say's no cortisol test yet because you'd most likely fail.. but if you have an appointment with your doctor have them run a TSH test only......ok but what about the rest of the test like t-3 t-4 anything else....nope just the TSH.....is my endo crazy or what!! of course he say's my TSH levels have been good for a long time...but why then do I feel so bad? Do I need a new endo?
October 18th, 2007
Went to doctor at OHSU today, we discussed my problems being related to MS and it's a big possibility .....I can't afford an MRI of my brain and spine or a spinal tap so I'm out of luck. I have many symptoms of MS including pins and needles (daily), numbness in legs, fatigue, had optic neuritis 3 times, double vision (stabilized to things up close), headaches and head pain (bad), muscle weakness (daily), forgetfulness, things fall and fly out of my hands for no reason....you name it I've had it, as you've read these symptoms have been going on daily, even when I feel better I always have some symptom, some days are worse than others.
November 13th, 2007
Went to Casey Eye Institute the other night for major eye pain.....everything checked out ok but couldn't say if it wasn't optic neuritis (don't think it was, but you never know) they did say I had enlarged cups so glaucoma could be in my future...still feeling up and down since the last entry...joint pains, numbness and pins and needles feeling in my leg (right) heart palpitations in the early evenings, short term memory loss since I always forget things and its gotten worse...
November 22nd, 2007
My vision is blurry and I keep having to blink to try to refocus, I still have pain in my eye and sometimes my eyes feel like rocks other times they feel normal, shooting pains still going on almost daily.....have trouble staying awake in the afternoon, it was strange as months before this all started I could not stay awake for more than a few hours, I was always tired. Heart palpitations continue and feel a fluttering when lying down. Leg numbness and joint pains still a major problem.
January 8th, 2008
Happy new year (little late I know) still dealing with this crazy illness. aches and pains, eye problems...I see flashes here and there and now when I here certain noises it startles me it could be a ringing phone, the wind, the heater turning on and off, it makes my heart flutter and I feel strange, also getting tired of seeing things on the side of me that don't exist....I am always seeing something to the right of me and nothings there? going to Casey Eye Institute this Friday for another checkup since my eye pain is bad and now getting more of it on the right eye.
March 28th, 2008
Chest pain, eye pain, numbness are a daily thing.....I went to the ER last week with chest pain but they could not find anything, but did recommend that I have a stress test. My pains are getting very sharp and more pronounced, it wake's me up throughout the night, still using my CPAP machine. For some reason the headaches when on the right side are still worse then the left....I also had an MRI a month ago but can't get in to see the neurologist until May!! go figure. She said there was nothing bad on it but wanted to go over some things??
April 8th, 2008
April 10th, 1968 I was born at the university hospital here in Portland now known as OHSU, who would have thought 40yrs later I'd be going there with crazy medical problems!! This week my head pain is hurting badly, sharp stabbing pains in both wrists hurt this evening I'm taking my Amitriptyline and going to bed, oh boy another one of those nights!! will ask Friday if I can quit the Methotrexate as it does not seem to be working.....head pain, eye pain, shooting, stabbing pains all over, even with Methodeatho....what's the point in taking this medication if nothings changing.......when I get head pain-eye pain the only medications that work to get rid of it is Solu-Medrol or Dilaudid (and the Dilaudid helps me sleep too!!) Getting shoved from one doctor or specialist to another is not helping either! Well that's it for today....I'm off to bed.
April 27th, 2008
Well I'm still going, last night was terrible, leg twitches, eye pain and head pain, my fingers are twitching throughout the day, my heart rate is up, horrible sleeping troubles, my endocrinologist called the other day and said my thyroid is still a little bit off (no kidding) he's been saying that for over a year and a half but whose keeping track!. He wants me to start taking methimazole again at 5mg a day and come back in a few months to see what happening. Well I can tell you what its going to be.......well your graves disease is looking better but......yeah here we go again....I'll keep you on this medication for a year or so and we'll see what the test come back as.....
Going to see the neurologist in may and we'll see what she has to say about the growth on the pituitary gland. After my MRI she said there was nothing major but wants to discuss a few things......yeah like the growth on my pituitary gland. I'm fed up with feeling like crap day after day, the pain, the headache, the shooting pain all over, frozen joints and joint pain, tired all the time,cant walk sometimes, nausea and sweating just to name a few.
June 20th, 2008
Have been feeling the same, pain in my legs seems to be more severe these days, headaches or head pain still continues, sharp pains all over still. Tired all the time...not sure if its the new medicine called neurontin. I take 2 300mg capsules a day now. I can't ever seem to get enough sleep these days.
September, 8th, 2008
Well it's back!!! Double vision, even worse head pain and achy eyes, will this ever end? Back on methotrexate. feeling crappy, hot, tired, and don't forget nausea
Well It's been awhile, but on October 7th, 2008 I was given a radioiodine pill to get that pesky thyroid to settle down.....its been a month and my thyroid levels are .55 for TSH, that's the most it's ever been, my eyes seem to have settled down as well, I still get shooting pain and headaches but feel a little better. my muscles are sore still and am still dealing with the leg numbness......and to top it off now I'm experiencing a loud hum in my right ear, sometimes it sounds as loud as a vacuum cleaner. Going to see an ENT to figure out whets going on. I started a new medication called lisinopril it's to help lower my blood pressure and it's working well.
Been dealing with daily headaches still, pain all over and numbness in legs and arms, went to the doctors the other day and they are now checking for Hemochromotosis a build up of iron that can kill you if not treated.....of course the only treatment is by blood letting....you have to go once a week and they take pint of blood. This can sometimes take up too 2 years to get the levels down and once normal you have to go in once a month or so and give a pint of blood for the rest of your life....we'll see
February 24th, 2009
Test results for Hemochromotosis came back negative, if anything I have an iron deficiency. last night I became dizzy and had to lay down for awhile, my headaches are getting worse and just feel bad all the time. Still have double vision up close and when I'm tired my eye muscles struggle to keep things normal.
September 24, 2009
Well my test results from the endocrinologist came back and I'm Testosterone Deficient, I have to start taking AndroGel 4x daily.........this is forever.
October 2nd, 2009
Well the headaches that never go away have been more tolerable lately but as of today become worse......it's just like it use to be.....I will be starting testosterone cypionate shots every 2 weeks for the rest of my life. I have talked to my doctor and said I could do the shots due to the high cost of androgel at $291 a month, the 10ml vial of Testosterone Cypionate is about $96 for 5 months, I will be seeing Sharon at OHSU to show me how to do the self intramuscular injections....I hope this helps, my testosterone levels are at 72 when they should be anywhere from 350-1000
Been dealing with the vitamin D deficiency too, still having sharp pains everywhere and now been getting facial pains, no matter how much sleep I get I wake up tired and am worn out by 2:00 and in bed napping at 5:00. Today I didn't nap due to the head pain so I hope it will help with sleeping tonight, I also took 50mg's of amitryptaline to further help sleeping. I will have to see the sleep center again to monitor the apnea as testosterone therapy can make it worse.
Diagnosis:
- Grave's Disease
- Ophthalmic Graves Disease
- Optic Neuritis-Optic Neuropathy
- Paralytic Strabismus, Sixth Or Abducens Nerve Palsy
- Unknown Inflammation
- OSA (Obstructive Sleep Apnea)
- Encounter For Long-term (Current) Use Of Other Medications
- Adrenal Insufficiency
- Hypertension
- Pituitary Adenoma (microadenoma)
- Depression
- Obesity (387lbs) not that I was ever a thin person but prednisone works wonders on weight. Down from 411 lbs
- Testosterone Deficiency (Hypogonadism)
- Vitamin D Deficiency
Possible Diagnosis since this started:
1. Multiple Sclerosis (MRI, Spinal taps normal) Still don't know
2. Pseudo Tumor Cerebri ( didn’t have it)
3. Horner’s Syndrome It was a false horner syndrome due to unknown inflammation.
4. Possible Acromegaly (get test results on Monday) Results came back normal, another dead end.
5. Pituitary Microadenoma (have it)
6. Lupus (don't have it)
7. Hemochromotosis (don't have it)
Medications
I take or have been on since this started:
1. Solu-Medrol (don't want anymore) but works super fast for my headaches and vision loss
2. Prednisone (quit taking ) (nicknamed: deathisone, prednidead) at last was 5mg's a day down from a high of 180mg's a day
3. Promethazine
4. Atenolol (not taking anymore) 75mg a day
5. Isometh/D-Chloralphene (good for migraines) but did nothing for me
6. Tapazole (currently take) 10mg a day. Had radioiodine pill to kill off thyroid so no longer taking this med UPDATE 10/01/09 will have to start synthroid due to becoming hypothyroid now
7. Ambien CR (not very good)
8. Lunesta (take sometimes) keeps me asleep most of the time.
9. Lexapro (don't take anymore, but need too it worked great for depression) and in 2 weeks
10. Diamox ( never again)
11. Dilaudid (It’s the best for pain)
12. Vicadin
13. Valium
14. Darvocet-N
15. Methotrexate (in June) oh my!! Another drug (nicknamed "Deathotrexate" "Methodeatho") 20mg a week
16. Amitriptyline (not sure if its working) tricyclic antidepressants and helps with the sleep problems 10-20mg a day before bedtime. UPDATE Switch to 50mg tablets
17. Hydrochlorothiazide (water pill) 10mg's a day No longer taking
18. Hydrocortisone 5mg's a day to replace Prednisone. Started 01/17/07- No longer taking
19. Nystatin for oral thrush (thanks prednisone)
20. Folic Acid
21. CALCIUM CARBONATE-VITAMIN D2 (OS-CAL 500+D) 500 (1,250)-200 MG-UNIT ORAL TABLET
22. Neurontin 300mg capsules 2 times a day
23. Lisinopril
24. Testosterone Cypionate 200mg's every 2 weeks by self injection
25. 3000 units daily Vitamin D
This is me over 2yrs ago before this all started
I know I've gained weight.....Thanks Prednisone!! look at my puffy eye on the left, my eyes are red and sore
New Picture (4-8-2008)
I just wish that this would all go away, but from what I've read many people dealt with this for years before getting a diagnosis
Write to me below to share you thoughts and if you've gone through this type of situation, it's nice to hear from people to know we don't have to go through this alone.
Thanks for Visiting!!
