Awaiting Diagnosis

[help482]

Started to develop symptoms back in Aug 08 ... started with dysesthesia (tingling, pins & needles) in the genital and groin area. Occassional headache, pain behind the eye and stomach issues began (diagnosed w/ reflux).  Then began to experience numbness, pins & needles and tingling in other parts of my body.... legs, feets and hands ... but primarily below the waste.  Started to develop buttocks and lower back pain as well.  Get light-headed from time to time (very short lived).  Went to see a neurologist .... spinal MRI came back clean, brain MRI came back with evidence of nerve inflammation (demyelination or vascular).  Dr testing to see if MS .... Are all these symptoms I am having consistent with MS ?  The lower back/ buttocks pain and the genital dysesthesia are the most persistent problems that I have.  Scehduled for spinal tap next week.

[Sarahsmom46]

RRMS - Relapsing/Remitting Multiple Sclerosis: Majority of MS cases are in this pattern.  You may have a relapse consisting of various symptoms and get better within a few weeks.

DMD - Disease Modifying Drug:  A class of drugs that help slow the progression of MS.

That's it in a nutshell.  Ess may be along later to add something.

[NoDiagnosisYet]

Yes same as HELP ... sorry for the confusion.  By 'atypical' I think he meant not the 'textbook' case as u state it.  I do recognize that u don't have to have a positive LP to be diagnosed.  

I believe all the blood work was completed ... just wanted to check back to the 'mimic' list if you will to ensure that no stone has been left unturned.  So plan on putting that list in front of him the next time we meet.

Sorry ... don't have all teh acronyms down .... what does RRMS and DMD stand for ?

[essdipity]

Hi. Are you the same person as 'help'? I'm confused here.

I think your doctor is waffling by saying atypical MS. Really, MS is MS, but some cases are more 'textbook' than others. You do NOT repeat NOT have to have a positive LP to be diagnosed. What does your doctor mean by manageable? All people with RRMS should be on a DMD. If you've just had MRIs done, there's a good chance nothing will be different in 3 months. (And will your insurance even pay so quickly again?) I'm just throwing out some red flags, and if I were you I'd press my doctors for answers.

As to mimics, all mimics have to be ruled out for MS to be diagnosed. The big majority of the time this is just blood work so it's not a big deal.

I hope things get clarified for you.

ess

[NoDiagnosisYet]

Met with Dr and he has diagnosed me with "Atypical MS" ... ie not the classical MS case he said given the pattern of the lesions on the brain as well as a neg spinal tap.  He mentioned that he has seen cases like this before.  He thinks what I have is manageable.

However ... don't think he has tested for all mimics (but only for the most likely ones ... ie, Lupus, HTLV and Lymes).  I will push him to explain why he has not tested for some of the others (or why he has ruled them out).  He suggested that I go for another MRI in three mos and re-sched an appt.  No meds thus far.

Does this seem reasonable ?  Should I be tested for every mimc out there b4 starting any medication (obviously there is a risk in not getting the right treatment).

Anyone ?

[NoDiagnosisYet]

Hi back again.  Had my spinal tap performed .. I have not spoken to the Dr, but after pressuring the nurse was able to get her to give me the results over the phone as the Dr would not be able to see me until next Monday... all all blood and CSF tests  came back negative.  My understanding from the nurse is that given the lesions spotted on the brain MRI, that just because the spinal came back neg, doesn't necessarily mean that I do not have MS.  Here is a list of tests that were performed..

HTLV I/II
Oligoclonal Band Profile - ARUP no. 80440 (Collection- CSF & Serum-1 Gold Top)
Cell Count, CSF
Glucose, CSF
Lyme/ Ab/Total, CSF
Total Protein, CSF
Cytology, CSF
Ig Quant (IgG, IgM, IgA)
Immunofixation, Serum

Not sure what to make of some of the above, but do know that Oligoclonal Bands indicate the presence of MS and that came back neg.  Could I have still have MS ? Nurse says I still could. Based on the above, can virus be ruled out ?  What questions should I ask Dr ?

[NoDiagnosisYet]

Also .. given my lower back/buttocks pain and weakness in legs would seem to suggest siatic nerve damage.  Any danger of further aggravating by getting the tap done ?  Also, my understanding is that it takes 3 weeks for results to come back .. should I contact dr to let him know about the leg weakness?

[NoDiagnosisYet]

Thanks Sllowe and thanks LGK.  Freaking out as u can imagine .... especially now given today (in addition to that lower back pain) .. feeling weakness in the legs.

My lumbar puncture is scheduled for tomorrow.

[sllowe]

Hey Help,

Yes, some are, but I've not had the stomach issues.  Though I can say that I have had eating issues (mechanical chewing issues), that have 'led' to some stomach issues.  But my stomach wasn't the primary issue.

Vertigo is common with MS, but it would be important to be evaluated to see if this is what you experience vs. lightheadedness.

Since you are in the middle of this lengthy work-up, you will enjoy reading our health pages on Mimics, and how MRIs show lesions.  There are many mimics out there, and I strongly suggest anyone getting a work up learn all they can because not all Drs run the all.  

Keep records of those tests too.

What day you go for the tap?  Wishing you well w/that. A handful of us have had them w/in the past couple weeks.  The procedure itself isn't so bad.  And we can talk to you about that before you go - k?

Thanks for joining us!

[Lulu54]

Hi Help!
The symptoms you list COULD be MS but they could also come from a number of other neurological diseases.  On our health pages (yellow icon, upper right side of this page) you will find a great resource about MS mimics.  I would suggest you spend some time reading that as well as some of the other information there.

There is also informatin there regarding the spinal tap/lumbar puncture (LP).

When you think of more questions, be sure and come back and ask them.

Welcome to the MS forum!
Lulu