Discussions By Condition: I cannot get a diagnosis.

strange symptoms

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: Anonymous
  • March 8, 2008
  • 03:43 AM

Hello all,
I am a 40 yr old female with an array of problems that have interrupted my life, not to mention school, relationship, and general wellbeing. I have been gathering new problems over the past 5 years and the probable causes range from IBS, to fibromylagia, to migraines. I was hospitalized with a possible TIA (stroke0 in October but all test (MRI, cat scan, cardiac enzymes and such) came back normal. I have severe fatigue, memory loss with loss of time, severe migraines ( hemeplygic migraines was the diagnosis in October, migraines that mimic a stroke) hair loss and swelling in the left foot and ankle. A trip for glasses turned into another problem today. The pressure in my eyes was high and I could not be fitted for a new prescription. in other words my eyeballs are also swollen. If anyone has any ideas about finding what is going on please let me know. I have taken a list of problems to my GP and neurologist and they act like I am crazy. I am at my wits end. Please help if possible.:confused:

Reply Flag this Discussion

19 Replies:

  • were you checked for a brain tumor? thyroid disease?
    Monsterlove 2921 Replies Flag this Response
  • Hello all,I am a 40 yr old female with an array of problems that have interrupted my life, not to mention school, relationship, and general wellbeing. I have been gathering new problems over the past 5 years and the probable causes range from IBS, to fibromylagia, to migraines. I was hospitalized with a possible TIA (stroke0 in October but all test (MRI, cat scan, cardiac enzymes and such) came back normal. I have severe fatigue, memory loss with loss of time, severe migraines ( hemeplygic migraines was the diagnosis in October, migraines that mimic a stroke) hair loss and swelling in the left foot and ankle. A trip for glasses turned into another problem today. The pressure in my eyes was high and I could not be fitted for a new prescription. in other words my eyeballs are also swollen. If anyone has any ideas about finding what is going on please let me know. I have taken a list of problems to my GP and neurologist and they act like I am crazy. I am at my wits end. Please help if possible.:confused:srb,Sounds like thyroid disease, especially with the eye pressure being high and your eyeballs swollen. Have you been tested for Grave's Disease and Hashimoto's Thyroiditis? Both can cause Thyroid Eye Disease or TED. TED can cause bulging of the eyes and other problems.All your symptoms are those which I have had with thyroid disease.You need to get the following tests to start with:TSHFree T3Free T4Thyroid AntibodiesIf your thyroid antibodies are elevated, you should see a qualified endocrinologist or a good internist to get an MRI of your brain for ruling out pituitary involvement. And possibly you should have a thyroid scan too.If you're not satisfied with the first doctor who treats you, find another one. Don't give up. I saw five doctors in the last four years before I found a good one and a keeper. Untreated thyroid disease can cause serious conditions.A great website for information and a link to a supportive online forum is:http://www.freewebs.com/thyroid
    Anonymous 42789 Replies Flag this Response
  • I agree with DXd and also I would mention that you are not too young to be experiencing the many symptoms of perimenpause....I started at about that age and still going through it at 48...yeah, it can last a while! The symptoms are similar to thryoid so good to get the whole panel of blood work while you are at it. I had graves disease at your age and that sort of kicked the whole hormonal problems off....graves disease is hyperthryoid and can have some eye involvement. You are not crazy....you just have not been properly diagnosed yet. Joan
    Joan5555 316 Replies Flag this Response
  • I had headaches, fatigue, and neuro symptoms for years and was told I was nuts, too. Please don't listen to doctors who tell you this or imply it. As it turns out, I have a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. According to one paper on it, the two most common symptoms are fatigue and migraine-like headaches. Other symptoms that you can get (but don't necc have to have- and each case is different) are:seizuresstuporfocal neuro deficits resembling strokescognitive impairment including memory loss and language problemshemiparesisataxiaI'm not sure about the eye swelling- except that you can get HE with Grave's as well as Hashimoto's thyroiditis.HE is diagnosed by elevated thyroid antibodies- most of us have normal thyroid hormone levels (in fact, I was reassured many times that my gland was healthy... only to find out later that it was full of tiny nodules from the autoimmune destruction). It is treated with steroids. Most doctors have never heard of it, which is why I post here- it took me 8 years to get diagnosed. I'd like to help others get diagnosed quicker (if HE is what they actually have). Another thing you can look into is celiac disease.A correct diagnosis is everything. Do not give up until they have explained your symptoms.
    Anonymous 42789 Replies Flag this Response
  • Look into porphyria also as thyroid diseases are common in the porphyria patients. http://wrongdiagnosis.com/p/porphyria/intro.htm Do get seen by an endocrinologist. Can you go to a good medical school in your area for a full work up/ evaluation???? tdwi ;) =================== Hello all,I am a 40 yr old female with an array of problems that have interrupted my life, not to mention school, relationship, and general wellbeing. I have been gathering new problems over the past 5 years and the probable causes range from IBS, to fibromylagia, to migraines. I was hospitalized with a possible TIA (stroke0 in October but all test (MRI, cat scan, cardiac enzymes and such) came back normal. I have severe fatigue, memory loss with loss of time, severe migraines ( hemeplygic migraines was the diagnosis in October, migraines that mimic a stroke) hair loss and swelling in the left foot and ankle. A trip for glasses turned into another problem today. The pressure in my eyes was high and I could not be fitted for a new prescription. in other words my eyeballs are also swollen. If anyone has any ideas about finding what is going on please let me know. I have taken a list of problems to my GP and neurologist and they act like I am crazy. I am at my wits end. Please help if possible.:confused:
    TaylorDeelwithit 382 Replies Flag this Response
  • I have thought about some type of thyroid problem but all test for the thyroid, T3 T4 and such are all within normal range. Do you think it could be Hashimoto's Encephalopathy or Hashimoto's thyrotitis (sp) with normal level?:confused:thanks for all your help in researching S :D
    Anonymous 42789 Replies Flag this Response
  • Do your symptoms flare up more after doing things? Do you also have sleeping issues? (eg hypersomina or reversed sleep cycle etc)
    taniaaust1 2267 Replies Flag this Response
  • I heard results on all thyroid antibodies and levels were normal. ANA normal, CBC normal, RA antibodies titer normal,. No std's no HIV, every blood test is with in normal limits. (The dr said it was all in my head) NOW I am crazy again.And yes I have a very awkward sleep pattern. Sometimes I want to sleep all the time but cannot stay asleep more than an hour or two at a time, other times I cannot even lie down to try to sleep. The flares happen more after no sleep or not much sleep and when it is cold. If I have been in a position more than about 30 minutes the pain when I try to move is excruciating I am not used to being sedentary. I have been active all my life. I am a runner, dancer, and gymnast in the past. Here in the past 3 years though I have gained 50 lbs because if I run 1/2 mile I have to rest for 2 days to re cooperate from the exercise. I would love to play sports or just walk around the block without feeling totally exhausted plus pain .
    Anonymous 42789 Replies Flag this Response
  • to answer the question I have a very awkard sleep pattern. not much as I hurt all the time, especially if i am in one position too long. I do not go to sleep until early morning and I am up every couple of hours.
    Anonymous 42789 Replies Flag this Response
  • Hey all, received the results of all thyroid, ana, rh, and cbc today. all within normal limits. It is all in my head again according to the DR. He believes I could not hurt and be as tired as I am because I am functioning. He thinks it is psychosomatic. I am trying to find another physician that does not act like I am crazy and will listen
    Anonymous 42789 Replies Flag this Response
  • Many doctors don't know the current "normal" readings for thryoid. IS your TSH above 2.5? Are your FT3 and FT4 in the upper 1/3 of the lab range? Or are the numbers very, very lower part of the range? It is possible you still may be looking at a thryoid problem. ALSO do check out the site I mentioned on perimenopause....you will be surprised at the symtpoms....including sleep patters and insomnia and aches and pains....for perimenopause, unfortunately, blood work can show normal, but believe me symptom-wise you are anything but! You are not too young for this...do go to power-surge.com when you get the chance. Just check it out, you may find yourself there. Joan
    Joan5555 316 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Herein the past 3 years though I have gained 50 lbs because if I run 1/2mile I have to rest for 2 days to re cooperate from the exercise. Iwould love to play sports or just walk around the block without feelingtotally exhausted plus pain . Post excertional fatigue like that (taking days to recover from something one previously could do easily) is normal in chronic fatigue syndrome, ones body just takes a long time to recover from any exercise. FM and CFS are overlapping illnesses and often go together. Fibromyalgia can cause some similar symptoms but with a less degree of exhaustion (thou FM people still suffer from a lot of tiredness) but with FM sometimes exercise is helpful with that. Your sleeping issues sound mostly pain related...so you need to find a doctor to treat your pain etc (FM pain isnt easy to treat, but can be treated). Treatment of the pain and sleeping issue..should be one of the first treatment approaches..so find a doctor who is listening to you. (If you have just FM, getting rid of the pain and getting good nights sleep, should improve things for you considerably). Hair loss..and swelling as far as I know, isnt a normal FM thing..but those two things can be happening in CFS. Ive had problems with both my feet swelling and also one of my hands swelling due to CFS. With CFS .. it can cause problems with getting glasses as ones eyes can be very different from one day to the next. To find a doctor who specialises in CFS (to get that ruled out and any other illnesses which are like it).. contact your local CFS support group (search online) and ask for doctors recommendations. You can also check out http://www.co-cure.org/Good-Doc.htm (list of doctors which specialise in FM and CFS)
    taniaaust1 2267 Replies Flag this Response
  • Thanks for all the info that has been given to me. I am compiling a list of never ending problems and taking a copy of most of this post with me to my dr on monday. will keep ya'll updated. again thanks for everything
    Anonymous 42789 Replies Flag this Response
  • back in 92' I was told that I had an inner ear infection, from 7 different Dr.'s, I had finially lost eye sight in my left eye, and they referred me to an eye specialist, and he diagnosed me with "psuedo cerebrial tumor" which was causing the inflammation, anyway, I did have this, and it is totally curable, it took a full year for the swelling to go down, but my eye sight was back within a few days, I would suggest that you see a "eye specialist"
    barb weiger 1 Replies Flag this Response
  • I thought I would post my thyroid panel results. All are within normal limits TSH 1.754 (0.350-5.500) T4 8.1 (4.5-12.0) T3 26 (24-39) free thyroid index 2.1 (1.2-4.9) normal ranges used by my physician are in (). I was told that all the problems, pain, hair loss, memory loss, panic attacks, and fatigue were due to depression and bipolar disorder. Hey this is the first time I have been called bipolar, depressed, and he also said possible hypocondria. Now I do feel crazy.
    Anonymous 42789 Replies Flag this Response
  • given your age, I would still strongly encourage you to check for perimenopause...go to that site I told you about: power-surge.com....it fits very, very well with that...believe me you are not too young at 41...often perimenopause starts late thirties...and unfortunately depending on the women can last up to 13 years...of course you do not feel awful the whole time! check it out, please! PS: yes, fortunately your thryoid numbers look good..that is really great news! Joan
    Joan5555 316 Replies Flag this Response
  • I thought I would post my thyroid panel results. All are within normal limits TSH 1.754 (0.350-5.500) T4 8.1 (4.5-12.0) T3 26 (24-39) free thyroid index 2.1 (1.2-4.9) normal ranges used by my physician are in (). I was told that all the problems, pain, hair loss, memory loss, panic attacks, and fatigue were due to depression and bipolar disorder. Hey this is the first time I have been called bipolar, depressed, and he also said possible hypocondria. Now I do feel crazy. If your doctor is going to try to say you are crazy etc. ask for a referal to a psychriatrict doctor for a proper diagnoses then. It's very likely that the psych doctor will say you have something physical going on rather than mental (and then that will put the onus back onto the GP to try to work it out). Doctors often will call patients, who they cant work out what is wrong... hyperchondriacs or depressed. (That way they give a diagnoses..and get you off their back for not being able to work out what is wrong). Most people with CFS at one time or another, have been thought of by closed minded, uneducated doctors who are not wised up to the current studies and the CFS info.. as being hyperchondriacs. Seek out a CFS specialist as i suggested.
    taniaaust1 2267 Replies Flag this Response
  • You might consider going to a rheumatologist and asking about vasculitis. Swelling inside the tiny blood vessels of the body can choke off blood supply to any part of the body and produce symptoms in where ever it occurs. If it is your head - mini stroke or headache. In your joints, pain and other problems. And so on. It can be diagnosed and treated to make life better if not exactly cured. It is worth asking about.
    Anonymous 42789 Replies Flag this Response
  • Thanks to all who have tried to help me figure this out. rheumatologist is out of the question at this point since insurance requires a pcp to refer and without any test showing a rheumatological condition it is impossible to get a referral. second I did ask for a referral to a psych and he said he could treat the depression and bipolar disorder. what a crock. 40 yr old and now I am bipolar. :eek:
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.