Discussions By Condition: I cannot get a diagnosis.

new memeber, advice most welcome...

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: michelle40
  • September 19, 2008
  • 08:59 AM

my names michelle and im 40 years old, i have hashimotos thyroiditis and have since i was 27 yrs old, the gene for this is so strong it has spanned 5 generations on my mums side of the family from my great nan, to nan, to mum, to myself and also my 15 yr old daughter, i know that autoimmunes come hand in glove with each other and that if you have 1 the chances are that you will have more following as auto immunes dont come singularly. i have been ill for two years now and my thyroid is totally stable, ive been sent to see a rheumatologist, who performed untold blood tests and x-rays etc, all have come back negative and so have been made to feel like its all in my head!!! the pains i get are certainley not in my head, im at the end of my tether and dont know how much longer i can go on like this, ive been tested for lupus, ra, sjorgens syndrome but rheumatoid fator was negative, my mother and gran are both riddles with ra, and i know in my heart thats what i have, here are my ACTUAL not in my head symptoms....
severe joint pain and swelling, knees and hands are the worst, burning and cramping as well,
dry mouth all the time with burning throat and tongue
dry itchy skin, that has a patch under belly button which flares up, itches and blisters, this has been for 2 years...
nodules on the base of big toes...
constant sinus infections and flu like feeling...
pins and needles in fingers...
hot and cold sweats...
mebstrual problems....
always tired and very emotional, cry very easy...
hot sweaty hands....
trouble sleeping as my legs dont feel right, they kick out and move like they are fitting...
please, any advice would be so appreciated as i really dont know where to go from here, i was told that negative rheumatoild factor isnt always right, has any1 else had these problems or symptoms, thankyou so much

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4 Replies:

  • Have you ever been tested for celiac disease? Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies
    • September 19, 2008
    • 04:43 PM
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  • The legs sound like "restless leg syndrome"There are now support groups and big pharm medicine for sufferers
    chrismia 159 Replies
    • September 19, 2008
    • 04:54 PM
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  • Aquila is on target to suggest celiac disease. You may have some food allergies, which you can identify by gradually eliminating different foods (for a week) to see how you feel. It does sound like you are a set-up for auto-immune disease; the RA factor may be negative sometimes and positive sometimes. With your moodiness, have you considered seeing a psychiatrist who is knowledgable about autoimmune diseases? Sometimes taking an antidepressant will help some of the other symptoms, even tho you still have them. Cymbalta was recently approved for fibromyalgia pain. But there are others. And always need to remember that any drug you add to your body can have problems.For the legs kicking out, chrismia mentioned that there are medications...sometimes they help too.One other thing to consider...read the blog on "B12 deficienty is frequently misdianosed." You'll find it under new posts as people are always posting to it. There are lots of wierd symptoms related to B12 deficiency.Are you able to exercise? This may help you too. Please let us know how you do. Marionstar
    marionstar 228 Replies
    • September 19, 2008
    • 11:03 PM
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  • Okay, it's important here to separate factors relevant to the Hashimoto's Thyroiditis from other symptoms you are experiencing. Let's touch on the situation with your legs "fitting." The most likely cause here is Restless Leg Syndrome and it is a neurological disorder. There are several medications that can help reduce symptoms and each patient responds differently so you'll find that your doctor will work with you to seek the best response to relieve symptoms. Ropinirole is the only FDA approved medication specifically for treating RLS, but a good deal of success has been observed with dopiminergic agents and anti-convulsive agents, both at very low dosage. These drugs also can help alleviate the creeping crawling effects that some patients experience from a sensory standpoint. RLS can be very debilitating and deprive you of quality sleep. A good deal of the sensory complaints that you are describing are unfortunately common among patients with Hashimoto's Thyroiditis. It's important to realize that the physiological response to both dysregulation of the thyroid and an autoimmune response can produce characteristic fluctuations in the nervous system and sensory process. I would suppose that your primary care doctor has already discussed the fact with you that clinical depression is common in persons with Hashimoto's as well, so you need to realize that some of your symptomatic complaints are likely due to the somatic or physical sensations or emotional lability that you describe. Treatment is available and can improve your well-being in this regard. My suggestion is to be evaluated by a neurologist for RLS, as well as the presence of clinical depression. You'll find that targeting these two issues will bring some much needed relief. Let me know how you progress. You'll be fine. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 19, 2008
    • 11:28 PM
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