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Just learning about MS

I think I've had it a long time though. I haven't been officially dx'd by a neuro doc, but my PCP says there's little doubt in his mind. I've had 2 MRI's 6 years apart that showed 7 lesions with demyelination in brain. Haven't had any MRI of spine yet. But the MS tracker sure explains a lot of my obscure symptoms over the years! Wow. There's no doubt in my mind that I have it. Something has happened in the past 2 months though. I've gotten dramatically worse, spastic literally everywhere, can't form words well, neuro pain is off the charts. I feel like walking for me will be a thing of the past very soon. I barely make it to the bathroom, which by the way is at least 20 times a day and my bladder doesn't empty all the way. I'm inflamed, retaining fluid/pitting everywhere and catch myself shallow breathing. I am in some kind of flair. I haven't had an LP yet, but would 2 positive MRI's and all these symptoms be a pretty sure bet that I have MS? I can't see it being anything else. I'm so so so sick and I just wanna call it something so they can begin treating the disease instead of the 72 symptoms separately!
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572651 tn?1530999357
Hi Sherry and welcome to the forum here.  It sounds like something neurological is going on with you and I fully understand your need to have a name for this to get on trreatment.  I'm so sorry you are still hanging out there, just waiting.

Are you saying that there was no change in your MRI images in the six year span?  That  might be significant, but you also should have a spinal series done.  We know a lot of symptoms can come from spinal lesions, including bladder dysfunciton and walking problems.

Was the neurologist you saw someone who specializes in MS?  That is very important - this is a disease that normally takes a specialist to understand and to diagnose.  General neuros focus on everything..... and often their knowledge base is very diluted.

In the meantime, get yourself to a urologist - preferable a urogynecologist - who can treat your problems with frequency and incontinence.  You need to be tested to see if you have a UTI (very common) or retention which can cause that frequency urge.  

Come back and we'll help as best we can with questions and advice.
welcome again,
Helpful - 0
739070 tn?1338603402
HI Sherry,

We haven't "met' so welcome to the forum. Lu's advce about seeing an MS specialist is spot on and very important especially with complicaterd cases.

Please keep us updated with your doctor visits and MRIs.

Hoping you'll feel better soon.

Helpful - 0
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