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  • What does this sound to you? which auto-immune disease?

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    Old 04-19-2013, 04:18 AM   #1
    shahila
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    What does this sound to you? which auto-immune disease?

    ...... really nobody helped.

    Last edited by shahila; 04-20-2013 at 04:36 AM.

     
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    Old 04-23-2013, 01:13 AM   #2
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    Re: What does this sound to you? which auto-immune disease?

    Shahila, I flagged your post to respond, then life intruded. Hubby blew out a knee, so that meant ER, orthopaedist, and waiting on him. And I'm still following up with my own specialists after being hospitalized. We aren't deliberately slow here, things just happen now and then---so if you want to try again...? Vee

     
    Old 04-23-2013, 03:54 AM   #3
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    Re: What does this sound to you? which auto-immune disease?

    Quote:
    Originally Posted by VeeJ View Post
    Shahila, I flagged your post to respond, then life intruded. Hubby blew out a knee, so that meant ER, orthopaedist, and waiting on him. And I'm still following up with my own specialists after being hospitalized. We aren't deliberately slow here, things just happen now and then---so if you want to try again...? Vee
    thanks Vee.

    i was quite frustrated .. my problem was that my blood test showed autoantibodies for my thyroid ( hyper ) but in two months thyroid level was normal. when it was high , doctor said it looks like grave. however, even when it was high my doctor said some of ur symptoms look like Ms. for example, i was hyper but my body was freezing cold. or i had electric sensations. or i had lots of numbness. ( it cant be hashimo - i guess. because i had these symptoms while being hyper, and even when normal). but i am supposed to check thyroid again in 4 weeks. i have noted some of my symptoms in the Ms board. can u see there? i know something auto-immune is happening. but i dont know why. and i dont know which one .. i have an mri investigating ms next week.

    Last edited by shahila; 04-23-2013 at 03:57 AM.

     
    Old 04-23-2013, 04:29 AM   #4
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    Re: What does this sound to you? which auto-immune disease?

    Shaila, yes, this AI stuff is extremely frustrating. I also suspected that I had MS. I later learned that tingling electrical-like sensations can also occur from vitamin deficiencies (like B-12 and Folate, as one example. Later I was diagnosed with lupus.

    I also had a less-common recurrent photosensitive rash. My rheumtaologist was highly amused when I said I suspected MS plus a rash. Hey, at least I was in the right ballpark, which is much more than I can say for the many suburban doctors I saw.

    A while back, I printed out a chart of common AI's & their most common symptoms. From it, here are those for which muscle tingling, pain, and/or weakness are listed: Diabetes Type 1, Graves', Guillain-Barre (tingling & weakness esp. in legs), Hashimoto's, inflammatory myopathies (polymyositis and dermatomyositis), myasthenia gravis, lupus---and of course MS, like you mentioned. BTW, the scary part is that this chart lists ONLY common AI's, and already there's a lot of symptom overlap.

    I think Hashimoto's is often preceded by a "hyper" phase, and I think it can take awhile to diagnose either hyper or hypo. A friend had her levels checked for almost 2 years before being diagnosed with Hashimoto's. You could also take a look at the Thyroid Disorders board.

    Were there any OTHER anomalies in your standard CBC & metabolic panel? Like vitamin deficiencies, sed rate, C-reactive protein, etc.?

    Was the general ANA test run? It's positive in a variety of AI's, but it's not always germane to diagnosis, meaning in some of them, the diagnosis is based on more specific markers.

    I do think it makes sense to be tested for MS. (Hope the result is No.)

    I'll add more to this soon & hopefully others will chip in, too. Meanwhile, hang in there! Sending you my best wishes, Vee

     
    Old 04-23-2013, 04:44 AM   #5
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    Re: What does this sound to you? which auto-immune disease?

    Quote:
    Originally Posted by VeeJ View Post
    Shaila, yes, this AI stuff is extremely frustrating. I also suspected that I had MS. I later learned that tingling electrical-like sensations can also occur from vitamin deficiencies (like B-12 and Folate, as one example. Later I was diagnosed with lupus.

    I also had a less-common recurrent photosensitive rash. My rheumtaologist was highly amused when I said I suspected MS plus a rash. Hey, at least I was in the right ballpark, which is much more than I can say for the many suburban doctors I saw.

    A while back, I printed out a chart of common AI's & their most common symptoms. From it, here are those for which muscle tingling, pain, and/or weakness are listed: Diabetes Type 1, Graves', Guillain-Barre (tingling & weakness esp. in legs), Hashimoto's, inflammatory myopathies (polymyositis and dermatomyositis), myasthenia gravis, lupus---and of course MS, like you mentioned. BTW, the scary part is that this chart lists ONLY common AI's, and already there's a lot of symptom overlap.

    I think Hashimoto's is often preceded by a "hyper" phase, and I think it can take awhile to diagnose either hyper or hypo. A friend had her levels checked for almost 2 years before being diagnosed with Hashimoto's. You could also take a look at the Thyroid Disorders board.

    Were there any OTHER anomalies in your standard CBC & metabolic panel? Like vitamin deficiencies, sed rate, C-reactive protein, etc.?

    Was the general ANA test run? It's positive in a variety of AI's, but it's not always germane to diagnosis, meaning in some of them, the diagnosis is based on more specific markers.

    I do think it makes sense to be tested for MS. (Hope the result is No.)

    I'll add more to this soon & hopefully others will chip in, too. Meanwhile, hang in there! Sending you my best wishes, Vee
    Vee, thanks for ur prompt reply.

    i know it is weird but when i read these i prefer that my mri show up something because it sounds like the journey of diagnosis will be much longer. that is crazy ! : (

    i had no deficiencies. checked these things. but i have a history of high prolactin for many years, since i was 19. but now that i checked it was considerably less than before. still very high but much less than before.

    now that i write all my face neck hands are tingling. i m freezing cold. it s like something is grabbing my ankles or neck or throat or sometimes stomach ( looks like ms hug!?). i was told i m experiencing seasonal changes as well.

    u can possibly see my last post in MS board. lots of similar symptoms. i have no rash. i m also thin. i get hungry sometimes, but i m not much of an eater too. [ normal for me - but i feel i m thinner than before ]. do u think common tingling in throat neck reflects only thyroid problem? or it can be something else like ms or .. too?

    it s affecting my life. i feel really cold. but again if it is Hashimo, i cant be this much cold while being hyperthyroid? last month that i had hyperthyroid i was still very cold.

    Last edited by shahila; 04-23-2013 at 04:49 AM.

     
    Old 04-23-2013, 04:54 AM   #6
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    Re: What does this sound to you? which auto-immune disease?

    Shahila, here's something new that caught my eye re: Graves'. "Subacute Thyroiditis" is thyroid inflammation that causes *temporary* leakage of excess thyroid hormones, resulting in *temporary* hyperthyroidism that lasts from a few weeks to a few months. That might be one reason your dr. plans to retest you a mere 4 weeks after your first labs?

    In your initial post, did you say you don't have the bulging eyes that can be seen in Graves'? I just read that only a very few people with Graves' have this. If that's true, I don't think the lack should be deemed meaningful.

    More later---if I can think of more! Bye for now, Vee

     
    Old 04-23-2013, 04:58 AM   #7
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    Re: What does this sound to you? which auto-immune disease?

    Quote:
    Originally Posted by VeeJ View Post
    Shahila, here's something new that caught my eye re: Graves'. "Subacute Thyroiditis" is thyroid inflammation that causes *temporary* leakage of excess thyroid hormones, resulting in *temporary* hyperthyroidism that lasts from a few weeks to a few months. That might be one reason your dr. plans to retest you a mere 4 weeks after your first labs?

    In your initial post, did you say you don't have the bulging eyes that can be seen in Graves'? I just read that only a very few people with Graves' have this. If that's true, I don't think the lack should be deemed meaningful.

    More later---if I can think of more! Bye for now, Vee
    thanks Vee. lets see. i need to do mri next week, and then check thyroid in 2 weeks, 2 weeks already left .. cant wait for the results. and cant wait to get better like what i was in Dec 2011.

     
    Old 04-23-2013, 05:21 AM   #8
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    Re: What does this sound to you? which auto-immune disease?

    Meanwhile I read more of your posts. I'm glad the MS posters are sharing going back & forth and sharing their thoughts.

    Another interesting concept: that "collagen vascular diseases" can bring on some of the same neuro-type symtoms as MS. (That would include lupus, vasculitis, and the like.) To illustrate, from a lupus book I keep handy, here are neuro-like symptoms the author lists as being possible in lupus: cognitive dysfunction, headache, seizure, altered mental alertness, peripheral neuropathy (numbness, tingling, burning of hands &/or feet), movement disorders, paralysis, altered behavior, visual change, and autonomic neuropathy (flushing, mottled skin).

    But no mention of feeling cold a lot... hmmmm... I have arthritis & am hypersensitive to barometric shifts, and I often experience what's probably inflammation kicking up as feeling cold. (My husband confirms that my hands & feet feel icy to him, too.) I don't know what all that can suggest, so...

    ... I wonder how many others FEEL COLD A LOT? (Hope people notice the caps & comment.) Please let us know how your MRI goes. With hopes you learn more soon, bye for now, Vee

     
    Old 04-23-2013, 05:25 AM   #9
    shahila
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    Re: What does this sound to you? which auto-immune disease?

    thanks lovely.
    yeah, this coldness concerns me a lot. i m like being in fridge : D
    i will !
    i v seen coldness only in hypothyroid, Ms, Raynaud's Disease ( which ur fingers should get blue - mine does not).

     
    Old 04-23-2013, 07:36 AM   #10
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    Re: What does this sound to you? which auto-immune disease?

    Hashi's can actually cycle very quickly in it's initial phases between hyper and hypo thyroid hormone levels. My levels still fluctuate occasionally to this day! Graves and Hashi's antibodies can also fluctuate as well as hormone levels in initial phases and to top it all off, may or may not progress to full blown thyroid disease. Was the cause of your high prolactin levels determined? I would want my pituitary gland eveluated during that MRI because all these things could be linked. I certainly hope that it is nothing serious and that whatever it is can be determined quickly and treated promptly, plus ditto everything Vee said. Best wishes and lots of luck. (PS not everyone who has Raynaud's goes through the classic triphasic colour changes)

     
    Old 04-23-2013, 07:52 AM   #11
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    Re: What does this sound to you? which auto-immune disease?

    Quote:
    Originally Posted by luca689 View Post
    Hashi's can actually cycle very quickly in it's initial phases between hyper and hypo thyroid hormone levels. My levels still fluctuate occasionally to this day! Graves and Hashi's antibodies can also fluctuate as well as hormone levels in initial phases and to top it all off, may or may not progress to full blown thyroid disease. Was the cause of your high prolactin levels determined? I would want my pituitary gland eveluated during that MRI because all these things could be linked. I certainly hope that it is nothing serious and that whatever it is can be determined quickly and treated promptly, plus ditto everything Vee said. Best wishes and lots of luck. (PS not everyone who has Raynaud's goes through the classic triphasic colour changes)
    Thanks very much for the reply.

    i checked thyroid for my prolactin but tsh and other things were normal (10 yrs ago, and 5 yrs ago) then i did mri and on that time was normal (5yrs ago). so it was unexplained. my sister friend was like this too - for no specific reasons.

    yeah, i m coming to this conclusion that my thyroid might play a big role. it is a shame that i suffered for almost a year with a never-ending carpal tunnel and my gp did not ever wrote me a blood test. i dont understand what they have learnt at uni!

    will check mri and if it is neurological it might show up. i cant really wait to check my thyroid again soon. do you think i should only wait for another 2 weeks? apart from all neurological symptoms, i experience hair loss recently .. i really like my hair : ( how do u deal with it when u move between two extremes? i m not sure if this is the consequences of previous hyperthyroid and it will finish soon, or it is gonna continue as part of an ongoing thyroid problem. so many questions : (

    i also think that it is possible that i v had a combination of two autoimmune issues because: i experienced symptoms of hyperthyroid ( 2 month, 1 month ago) + severe coldness ( at the same time - from something else).


    how do u deal with your Hashi? do u take just thyroid hormones?

    Last edited by shahila; 04-23-2013 at 08:58 AM.

     
    Old 04-23-2013, 10:27 AM   #12
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    Re: What does this sound to you? which auto-immune disease?

    Well, in my misbegotten youth I would rapid cycle between hyper and hypo states in like a week. If I got chilled I would shiver like a drug addict for hours on end, lol. I just had to put up with it until I became clinically hypo permanently. Now I take thyroid replacement. It is interesting that you note carpal tunnel because although it's mostly caused mechanically, I believe it can be associated with thyroid functioning. Now I should mention that Hashi's is not the only autoimmune problem that I have, but it's been with me the longest. My hair would fall out, my skin would get dry, the architecture of my throat is malformed because of it, and so on. I hope you get some answers soon!

     
    Old 04-23-2013, 04:29 PM   #13
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    Re: What does this sound to you? which auto-immune disease?

    Quote:
    Originally Posted by luca689 View Post
    Well, in my misbegotten youth I would rapid cycle between hyper and hypo states in like a week. If I got chilled I would shiver like a drug addict for hours on end, lol. I just had to put up with it until I became clinically hypo permanently. Now I take thyroid replacement. It is interesting that you note carpal tunnel because although it's mostly caused mechanically, I believe it can be associated with thyroid functioning. Now I should mention that Hashi's is not the only autoimmune problem that I have, but it's been with me the longest. My hair would fall out, my skin would get dry, the architecture of my throat is malformed because of it, and so on. I hope you get some answers soon!
    thanks for sharing ur story. only if i could know why body does this to itself..

     
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