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So How Many Of Us Hyper Pots Have Gone Over The Following Diseases Over And Over And Over Again!?


julieph85

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Since I've been sick for the last two years I have researched the crap out of my symptoms. I always come back to the same diseases. I'm thinking there is a connection if we all keep looking at the same things. My tests always come back normal. What is the missing peice we have here?

Diabetes Insipidus

RAS problem

Pernicious Anemia

Hyper/hypo thyroidism

carcinoid

MS

I have also noticed that several women on here also have Hashimotos. I have RA and test negative for Hashi antibodies but my father has hashimotos and his started with almost the same symptoms I have. What is the connection between the Hashimotos and the POTS? It is undeniable that our symptoms almost match exactly someone suffering from thyroid disease. Especially the hyperandrenergic response and fatigue as well as symptoms after eating as well as the dirunal (worse in the morning) pattern of illness. I guarantee almost everyone on here has had their thyroid checked a million times. I just can't let the thyroid thing go, I feel like there is something to this, it feels so autoimmune endocrine to me...

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I also feel there is a connection to Hashimoto's, in my case (keep in mind that there are other known causes of POTS, including EDS--a collagen disorder). When I initially developed Hashimoto's I had POTS symptoms. It was very confusing b/c my TSH indicated hypothyroidism but I had tachycardia, anxiety, tremulousness, etc. Once it was determined there was "nothing wrong with me" other than Hashimoto's by my endo, I started on synthroid. My symptoms then resolved, until pregnancy when POTS became quite severe. There does seem to be an endocrinological connection, for me.

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I have to agree with this, and am also so frustrated that no one (certainly not me!) can find the missing link.... My brother has MS and SO many of my symptoms are similar to his. However, I've had a brain MRI which came back normal and my brother has the distinctive brain lesions that indicate MS. I sometimes wonder if it's not that I have MS but that he has whatever it is that's making me ill (he agrees that might be true, but MS is very different for everyone).

If it's not the MS thing, I often think it's an endocrine problem as my most debilitating symptoms happened after I went through sudden menopause after a hysterectomy. Before that, I was exhausted for years, but I could push myself. Now a trip to the grocery store is a major event. A night out with friends is almost impossible.

I'd love to think that someday (within our lifetimes!) someone gets to the bottom of all this.

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momtoGiuliana, with either your hashi or your pots do you experience upper body muscle weakness? My muscles are so weak they burn with lactic acid pain even from doing a minor activity...

Your list of diseases didn't include mitochonrial disease, just from your statement above this should be your next step. Check on www.mda.org and look for the closest MDA clinic to you, it's a good start if everything else has been ruled out.

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Toddm,

What do you mean by " burn from the lactic acid"

Am asking because i get awful chest pain that feels like burning - could it be lactic acid after too much activity?

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Hi emma, he was quoting me. I call it lactic acid pain cause it feels just like that- you know how your arm hurts real bad if you hold it in the air too long? I get that feeling in my face, chest, upper back, and arms. I've also noticed my muscles twitch and tremmor from even a small amount of activity. The other night my arms and face burned so bad just from holding my kindle up in bed to read it.

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momtoGiuliana, with either your hashi or your pots do you experience upper body muscle weakness? My muscles are so weak they burn with lactic acid pain even from doing a minor activity...

I get the upper body weakness esp btwn my chest and shoulders. It can feel like even my own muscle tissue is too heavy sometimes. Like I did 1000 push ups..

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I think the connection is autoimmunity and the Mayo Clinic are still convinced that all patients with POTS have a primary autoimmune condition (beacuse they believe POTS is autoimmune in all cases).

Others are less certain. And the research does not tend to support the Mayo Clinic experience.

I developed ankylosing spondylitis and POTS in the same month out of the blue. So you can tell me that they arent related until the cows come home but its obvious to me that they are - either directly or indirectly. Directly as in autoimmune mediated, indirectly as a vascular or endothelial consequence of chronic inflammation or cytokine elaboration.

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ramakentesh, I could not agree with you more. I have had RA for 6 years and this new illness reminds me so much of it in the way it flairs and goes into remissions. You can't argue that fact or the fact that it can be triggered by pregnancy (which is what happened in my case) or a virus. Pregnancy is also what caused my RA 6 years ago! I absolutely believe it is an inflammatory autoimmune process.

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All my symptoms seem to be at their worst during the spring and fall...which also happen to be the times when I have seasonal allergies. The neuro at Mayo thinks they may be linked since allergies trigger the immune system and could theoretically cause the same flare in symptoms that a virus or infection would cause.

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