Does Anyone Have Ms And Oi

[blsvlo]

I was diagnosed in 2005 with multiple scleosis with mri and spinal tap...showed 6 lesions and now more and 3 on spine...I mentioned this earlier but I have been having the symptoms simaliar to POTS since before my diagnoses..

My question is could the doctor be wrong about the ms causing pots and does anyone have the same issue... I feel so alone in this. I requested all my records from everywher I have been and I am going to Vanderbilt If they will take me..

Anyone heard of POTS causing lesions on the brain and spine...sometimes I wonder if I really have ms except I had the tests that are suppose to help diagnose ms..... Anyone?

Hugs Lisa

[MomtoGiuliana]

I happen to know someone with EDS and POTS who has a brain lesion. She was not diagnosed with MS. I am thinking there are others on this forum with lesions and POTS?

It is so hard to feel so alone. I hope you can get to Vanderbilt for more testing.

Hugs to you

Katherine

[Lukkychrm42]

In my POTS experience I've never heard of autonomic dysfunction causing lesions like that. But it definitely seems like the lesions or MS might cause autonomic dysfunction. I think it's probably possible to develop MS while not necessarily getting symptoms concurrently. Moreover, it would definitely be possible, even if uncommon, to have both POTS and MS at the same time, even independently of one another. Plus, I would imagine MS flares to spike POTS symptoms. I'm sorry you're dealing with all of this, and I hope you get some answers soon.

XOXOX,

Megan

[blsvlo]

thank you for the support and your replies..... I have been bedridden since my last attack of OI (Feb 23 07) No drs. seem to care and I do wonder if it was there mom or wife or daughter if they would do more... I do have great spirits and thank God for this laptop and I have a great family.... I can 't believe just a year ago I was so normal and how does someone end up with two different conditions that are so unpredictable that you don't know how to plan for the next day..... This can be very hard to deal with and for some reason I want answers...... If it is the ms causing this ok then I will just deal with it because I have exhausted all medicines... i am super sensitive to everything I have tried... My husband jumps up out of bed to go to the kitchen and I thougt I'm doing the same thing... I pulled the covers off and got up and my mind was going but my body couldn't that hits me hard.... When I am able to make it out of the bedroom door I am going to kiss the floor.... . So many things I have taken for granted....Thank God for knowing I am not alone! Lisa

[kmpower]

Hi and welcome and please don't give up!

There are a few connections I can think of. I have OI, not POTS, but some of it is a matter of degree more than anything. Still, I have studied up on OI to learn more about my own stuff (well, we all do, don't we?).

Gluten can cause OI because of the effect on the nervous system of any allergen. And gluten can cause lesions on the brain and spinal cord. Try to find a study (I know it is on PubMed and I can find it if you cannot.) where people diagnosed with brain lesions who had NO digestive problems were taken off gluten and the lesions went away and neuro symptoms got better. Either their MS was caused by gluten or it was really undiagnosed celiac.

Vit D deficiencies can cause MS and also a type of OI.

MS patients who cannot exercise much can develop a "deconditioning" type of OI.

I am sure there are more possible links. OI is not really a disease, but more a symptom related to many mechanisms.

Best of luck in your self-study.

OLL

[Guest tearose]

Lesions can be other things too. I'm not saying yours are not MS just that could it also be something else?

nothing is easy with us.