Discussions By Condition: I cannot get a diagnosis.

Ongoing Range of Symptoms

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: ruth40
  • March 26, 2008
  • 02:46 PM

Hi I have had symptoms for over 10 years with no diagnosis, so I'm not sure anyone can help - but I thought I would try.

I am a 41 year old woman. Over 10 years ago I started getting a number of irritating but small symptoms. These were regular sore throats, patches of numbness on right thigh, slight stiffness in the morning, and tiredness. I was then diagnosed with bronchiecstasis (lung damage - and no I don't smoke) and then an underactive thyroid.

Meantime other symptoms started coming. These were sudden bladder incontinence that came and went e.g. for a day I was totally incontinent, and then got better itself, another time I was nearly totally incontinent for about 6 months. Also slight bowel incontinence e.g. slight bit of faeces coming out, but just enough to have to wipe myself in the toilet rather than change clothes. Also lots of tingling feelings down a lot of my right hand side and especially bad in my face -seems to radiate from my eye sometimes or from my ear. Also got lots of small electrical shocks. Felt ill and tired.

The tingling slowly over a couple of years turned into a burning pain and other symptoms came and went (as well as those mentioned above). These are:

intermittent hair loss
finding it hard to think
feeling very out of it
slight pain in my joints especially fingers
redness in my face especially in my right cheek - and often feels very warm
shivery one minute, too hot the next
aching in my joints - as you do when you have flu
calfs aching after walking for about 5 minutes
feeling suddenly very depressed and then suddenly feeling fine again
pain in my abdomen that often radiates through to my back
fatigue in my arms and hands e.g. finding it difficult to wash hair as arms get tired putting them above my head
cold hands and fingers

Sorry for a long list but it is hard to know what is important and what is not. I have had an MRI and lumbar puncture to rule out multiple sclerosis, a scan in my abdomen, a number of blood tests twice to rule out lupus and a whole range of blood counts. Nothing has ever been abnormal.

It seems as if I can be pretty well for a long time - up to 9 months. Then the only symptoms I get are the burning pain and numbness. Then I seem to get periods where I am ill and I get all or a range of the above symptoms coming and going until I get 'better' again. Dr and Consultant accept I have a physical illness but say they don't know what is causing it. Any ideas?

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7 Replies:

  • Don't know about Lyme, but I don't think it has anything to do with electro sensitivity. By the way I moved house and job while my symptoms were slowly getting worse, so it is unlikely to be due to an environmental cause.
    ruth40 55 Replies Flag this Response
  • Hi I have had symptoms for over 10 years with no diagnosis, so I'm not sure anyone can help - but I thought I would try. I am a 41 year old woman. Over 10 years ago I started getting a number of irritating but small symptoms. These were regular sore throats, patches of numbness on right thigh, slight stiffness in the morning, and tiredness. I was then diagnosed with bronchiecstasis (lung damage - and no I don't smoke) and then an underactive thyroid. Meantime other symptoms started coming. These were sudden bladder incontinence that came and went e.g. for a day I was totally incontinent, and then got better itself, another time I was nearly totally incontinent for about 6 months. Also slight bowel incontinence e.g. slight bit of faeces coming out, but just enough to have to wipe myself in the toilet rather than change clothes. Also lots of tingling feelings down a lot of my right hand side and especially bad in my face -seems to radiate from my eye sometimes or from my ear. Also got lots of small electrical shocks. Felt ill and tired. The tingling slowly over a couple of years turned into a burning pain and other symptoms came and went (as well as those mentioned above). These are: intermittent hair lossfinding it hard to think feeling very out of itslight pain in my joints especially fingersredness in my face especially in my right cheek - and often feels very warmshivery one minute, too hot the nextaching in my joints - as you do when you have flucalfs aching after walking for about 5 minutesfeeling suddenly very depressed and then suddenly feeling fine againpain in my abdomen that often radiates through to my backfatigue in my arms and hands e.g. finding it difficult to wash hair as arms get tired putting them above my headcold hands and fingers Sorry for a long list but it is hard to know what is important and what is not. I have had an MRI and lumbar puncture to rule out multiple sclerosis, a scan in my abdomen, a number of blood tests twice to rule out lupus and a whole range of blood counts. Nothing has ever been abnormal. It seems as if I can be pretty well for a long time - up to 9 months. Then the only symptoms I get are the burning pain and numbness. Then I seem to get periods where I am ill and I get all or a range of the above symptoms coming and going until I get 'better' again. Dr and Consultant accept I have a physical illness but say they don't know what is causing it. Any ideas? You dont say if ur taking any medication other than treatment for ur under-active thyroid........actually u probably know this can make ur hair fall out......have u had ur thyroid levels checked lately ? Also....what kind of pain do u have in ur face, is it here that u are getting feelings of electric shocks ? Sorry i cant help u with all ur symptoms but regarding pain in ur face i might be able to help ! Another thing that help my general aches and pain in bones & joints, it's Glucosamine Sulphate it is a natural tablet that my Pain Consultant told me to take........i have found them to be very helpful also take Cod liver oil capsuals. Some medication can make ur bladder & bowel more relaxed & then can cause a problem with leakage ! Hopefully someone here will come up with more ideas than i can. List ur medication if any ? Hope u feel better soon :)
    Tootsie 628 Replies Flag this Response
  • when you have one of these attacks after a period of almost wellness.. does there seem to be any trigger to it? eg excessive stress (im not saying thou that your illness is psychological caused, it's just that stress can trigger off some immune things etc) or maybe being more physical than usual? and then an underactive thyroid. i also wonder if your thyroid is being treated enough. Thou i cant remember what symptoms underactive thyroid causes, i know it can cause heaps. I also know that some patients are undertreated for that condition for years before it's realised that they are not being given enough meds.
    taniaaust1 2267 Replies Flag this Response
  • Sorry I have been laid low the past week so only just read these posts. I take thyroxine. My underactive thyroid is checked regularly and for many years has been fine. I take amitriptyline for the pain as well. The electric shocks happen at various bits of my body most commonly in my foot, leg and face. Although the pain I get is more often a burning feeling. After being well the triggers seem to be being run down and tired, and happens more in the winter than summer. I get cold sores and fugal infectiosn at the side of my mouth and it is usually when I am getting these that I start becoming unwell again. The badder and bowel incontinence started before I was taking any medications.
    ruth40 55 Replies Flag this Response
  • Hi, I would definitely get a good check again on that thryoid! Doyou know Mary Shomon's site on thryoid? Many doctors STILL do no have the right ranges for FT4, FT3 and TSH and it is quite possible you are not taking the right amount of meds for you now. Check out the site, post your results and the ladies are really great there! ALSO: you are 41 and (I have thryoid problems too by the way and I am 48) and at that age I started experiencing the first symtpoms of perimenopause...blood tests will not show this, but believe me you are just right there...unfortunately the symptoms of perimenopause are so similar to thryoid it is hard to tell what is going on some time. Go to www.power-surge.com (non commercial site) and check out the 34 symptoms of menopause and see it you find yourself there...they aslo have a great forum and great ladies....hope to see you there...Joan
    Joan5555 316 Replies Flag this Response
  • Two things come to mind:1. You might have a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy2. You have a lot of rheumy type symptoms. I'm assuming you have low thyroid function due to autoimmune thyroiditis. If so, you are at risk for a wide variety of other autoimmune diseases such as lupus, rheumatoid arthritis, celiac disease, pernicious anemia, etc etc. The stereotypical autoimmune patient is the 30 year old female, so this would fit in with your age of onset.You might want to scout around for a rheumatologist who is willing to investigate. Sorry you're going through this.Best Wishes.
    Anonymous 42789 Replies Flag this Response
  • Thanks for the suggestions. I have had tests looking for inflammation in the body and these have always come out normal. So my Dr hasn't thought there would be any point in referring me to a rheumatologist.
    ruth40 55 Replies Flag this Response
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