do I have MS or did it return ?

[mjoy444]

all my symptoms or most of them are listed in "about me" what on earth do i have , what is going on.

[COBOB]

I was in no way trying to squeeze anyone out of anything and it should not be taken that way.  I read the description of symptoms and I can see why the doctors thought herpes zoster.  The odds are much higher (10 times higher) for shingles than MS and the symptoms fit pretty well.  30 years ago MRI wasn't really available.  

So an MRI of the Brain now might be a good idea.  There is also the possibility of two or more diseases presenting.  Do a time line, then see a Neurologist.  The neurologist may have you see other specialists including Infectious disease, urology and rheumatology.  My question is where is your Primary Care Provider in managing your symptoms?   Has your PCP referred you to any of these specialists?

Bob

[essdipity]

Bob, long-term remissions may be rare from the statistical standpoint. The vast majority of patients do not go many years between attacks, true.

But since MS is not a rare disease, that still leaves a great many people from the numbers perspective who may go even decades without a flare. I don't know but it is logical to assume that many of our members here are atypical in one way or another. At least they haven't been able to get what they need from the usual sources. And I wouldn't want to squeeze these people out by telling them it's not possible for MS to relapse after an extraordinary long remission.

I am all in favor of statistical analysis and the scientific method. They tell us what to look for and what is common, thus giving us new knowledge. But there is also a human or personal element that is an important factor in medical diagnosis. We can't leave that out.

ess

[shermay]

I agree with Sarah, you need to find a good Neuro.

Go in with a time line - so you don't forget anything.

BTW I went 11 years w/o a relapse after I was first dx.

Welcome to the Forum.

Debs

[COBOB]

I will stand by very rare.  The published statistics say "The mean relapse rate for untreated patients ranges from approximately 0.5 to 0.8 relapses per year."  Obviously there will be outliers outside that range, but the it seems that the 50 %-tile should expect a relapse every 24 months or sooner.  Based on the numbers, a decade long remission "pretty rare (I'd estimate in the 5 th %-tile margin of the curve.)  I'm prone to taking the published data over the anecdotal evidence.

Half body peripheral neurologic symptoms with pain, blisters with decade long remission is very consistent with herpes zoster.  There is a Rapid PCR tests for Herpes Zoster DNA from a tissue biopsy during an outbreak.  The incidence of herpes zoster for healthy people under 65 is 120 to 340 cases per 100,000.  Over 65 it jumps to 390–1180 per year per 100,000.  In the US, the incidence of MS is about 34 per 100,000.  Playing the odds and probability, your chances of shingles is much higher and worth ruling out.

At least that is the way the science and math geek is thinking about this.

Bob

[Isitart]

**http://emedicine.medscape.com/article/1065657-overview

Hi mjoy, in case it's of use...  Was just symptom checking today and found this link which shows some lupus related rashes if you scroll down.  Note remove the stars from the link before pasting in your browser.
Take care
Sue

[Sparkysarah]

Well I am not sure what if going on for you but just want to welcome you to the forum. I suggest that you get yourself to a new good neuro (if such a person exists) and think that it would be a good idea to request some MRI scans to see if there is anything that shows up there as a starting point.  Also suggest that you do a succinct time line with dates and symptoms showing the most recent ones first. (Info about how to present this can be found on our health pages on top right hand corner of page)

Let us know what you decide to do.

Best wishes

Sarah.

[essdipity]

Welcome to the forum. I hope we can be of some help.

I agree that MS cannot return, since it never leaves. However, I disagree with Bob that it would be very rare for MS to go into long-term remission. We have had many many members here whose disease seemingly disappeared for a decade or more, only to reappear in much worse form. For that reason, we always recommend that symptoms be checked out thoroughly. 'Out of sight, out of mind' is not a good policy with MS. There are many people here who wish they had been proactive when first diagnosed, possibly saving them from at least some serious flares down the line.

Having said that, though, I'll say that much of what you describe does not sound like MS. If you have shingles, you'll know it. I had that about 15 years ago, and it was excruciatingly painful. Tears running down your face painful. Since shingles seems to follow one nerve track, it is not too difficult to diagnose. If your doctor cannot do that, you need a new doctor.

In general, you definitely need a new doctor. You have so many different symptoms that need to be sorted out.

I suggest you take all the info you included in your profile and make it into a new post here. Make sure you break it up into small paragraphs. That way more readers will see it and respond.

Best of luck to you,

ess

[COBOB]

Well, I don't think MS "returned," since MS can't "go away."  It would be very rare for MS to go into a long term remission.  Shingles, on the other hand, can become latent in the nerve cell bodies and other nerve tissue for decades.  Years or decades after infection, the virus may break out of nerve cell bodies and travel down nerve axons to cause viral infection of the skin in the region of the nerve.  It can also cause "Post-Herpetic Pain Syndrome" that can occur for decades.

Blisters/rash are common in shingles but are not a sign of MS.  Shingles also cause one sided pain symptoms.

Bob