Symptoms for almost a decade with no diagnosis

Snoopy · 10-22-2013, 05:03 PM

Quote:

Originally Posted by Mariel

what is "low EDDS"?

EDSS = Expanded Disability Status Scale

Here is the EDSS and what it means in terms of disability:
http://www.mstrust.org.uk/atoz/edss.jsp

The McDonald Criteria is the diagnostic criteria used in MS. When I was diagnosed in "85" the criteria was known as the Poser Criteria.

I was diagnosed with MS without MRI evidence. The diagnosis was based on neuro exam, A positive Lumbar Puncture and a severe exacerbation, every other test I had was negative. One year after diagnosis I met the criteria with my second severe exacerbation.

yeti · 10-22-2013, 05:10 PM

EDSS is the Expanded Disability Status Scale - a measure of disability in MS patients.

I guess I hit the McDonald criteria with 1 observable lesion, multiple documented attacks suggesting different lesion sites, and positive CSF.

Mariel · 10-22-2013, 11:24 PM

Snoopy and Yeti, thanks for your replies. Anyone have a "periventricular" answer?

weetagirlywirly · 10-27-2013, 08:07 AM

Quote:

Originally Posted by vs1988

I should also add that I get episodes of severe brain fog, sometimes accompanied by slurred speech, and inability to find words. These usually occur on the "bad days" with the fatigue and weakness.

I read your posts and everything you said was described so well, it was as if you described my story. I'm sorry that you are going through this and doctors just don't seem interested in getting you the help you need.
The way you described your symptoms onset etc is the same as what has been going on with me too.
It is sad to hear that your doctor dismissed you and blamed it on " stress" .
Really? Why do so many of us get that as being our problem.
I am undiagnosed still and hanging in limbo land too. I am new to this board and have only posted on here once before. Reading these posts on here at least help me know that I am not alone in this journey.
I hope you find a doctor that will hear you and take you seriously. Good luck and keep us posted.

ewizabeth · 10-27-2013, 08:36 AM

I agree with everything that Karilann said. It is shameful that they keep brushing off your symptoms. I hope that you will be able to see a neurologist soon.

Quote:

Originally Posted by karilann

You need an MRI. To diagnose MS, you need an MRI with lesions showing consistent with MS. (other things can cause lesions)

You need symptoms separated by time and space (you have had that)

You need tests to rule out other causes (B12 deficiency, Lyme's etc.)

Sometimes they will do a spinal tap to check for proteins in the spinal fluid.

Evoked potentials may be done also to see how you stack up.

I think its HORRIBLE that your doc did not let you see a Neuro. You may need another doc! MS needs immediate intervention and you are not getting any facts from your doc. Stress is not a diagnosis in a "healthy" young person.

Perhaps you do not have MS......but I read nothing in your post that proved that. They need to seriously look for MS and things that mimic MS.

Mariel · 10-27-2013, 04:33 PM

I don't know if some insurances are rationing visits to specialists. It's a crying shame, if so. You need a neurologist or at least someone who can read MRI's. A few pcp's can do this. But not all.
I guess no one has an answer for my periventricular question. It seems anyone reading this has not been told lesions must be periventricular for diagnosis. That could just be a ludicrous myth which an early neurologist told me, early in my own dx. That's one problem you will face if you DO get a neurologist, that they have disagreements and they are not all equal in skill.

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