Is it ms

[Elliehope6]

In the past 3 yrs I have seen 6 neurologists. A couple say mri shows small lesions, one said could be stroked or migraines, one says lesions are all over my brain. Spinal tap shows 6 bands. 2 drs say def ms. One is treating me with Avonex but doesn't give me any info on ms. 2 said not sure. 2 said def not ms, one of those head neuro at ms clinic at DUKE. Year ago he said not ms but autoimmune encephalitis. Said o bands don't mean ms.but if I have that and it's untreated wouldn't I poss be dead by now? I have flares about every 2 weeks.slurring, slight walking off balance, extreme fatigue. Could last hour or 2. About every 3 months I have a major attack that lasts 2 days. All of the above plus extreme electric feeling shocks causing jerk motions in arms, legs and chest. I fight extreme fatigue and am on Adderall for it.the neuro treating me says none of these items are related to my ms, that they are caused by psychiatric problems. Funny, the booklet on ms he gave me does list all these things. Any thoughts on all this madness?

[supermum_ms]

You'd probably be better off focusing on all the reasons why the head of DUKE's MS clinic was convinced you didn't have 'MS', rather than if he got the autoimmune encephalitis right or not, there would definitely be a reason why the head of an MS clinic didn't see your results as being suggestive or consistent with MS. It's 'possible' if autoimmune encephalitis isn't in your records as being what DUKE diagnosed you with, it might of just been one of the MS mimics he mentioned that better suited your clinical and test evidence  

I think you really need to look into your medical records, and take note of exactly what your multiple MRI's state in regards to the lesions eg location, size, shape, dawson's fingers, enhance with contrast etc etc It's actually true that Obands are not conclusive diagnostic evidence of MS, Obands basically indicate infections and systemic inflammatory disorders, with MS it's the totality of your diagnostic evidence that narrows down your potential causes list. Keep in mind that IF those 6 Obands were also in the blood and not just unique to the serum, they basically cancelled each other out see below research link for more information http://www.ncbi.nlm.nih.gov/pubmed/8381471

In regards to pos ANA, it genuinely has nothing what so ever to do with MS, having more than 1 autoimmune condition isn't unheard of but then it would also be possible that your dealing with an MS mimic (eg Lupus) and not MS, more possible if you don't meet the MS Mcdonald diagnostic criteria.

Q: is it safe to say in the 3 yrs I've been on Avonex the ms has not progressed?
A: There isn't anything you've mentioned that would give me enough information to even guess if MS has progressed or not.

Q: How do I tell?
A: That's probably the million dollar question :D, technically your MRI's and clinical exam results determine if your are progressing or not, if your MRI's and clinical evidence has remained stable then it's not progressed.

Hope that helps.....JJ

[Elliehope6]

Thanks, JJ. I feel the DUKE dr was wrong because I haven't developed the major symptoms of encephalitis and that was over a yr ago. My ins limits me to my state and I've seen most of the neuros in Richmond, VA. Most say ms is their area but I think they are more of general neuros. I'd love to get my dr on tape talking the crap he does to me. He didn't explain any of the meds on the list he gave me 3 yrs ago. Told me to Google them. I'm just really concerned whether I have ms or not. My rhuem says yes. He has tested me for everything. Even encephalitis and said that's out of the question. I've looked up what mimics ms but it all keeps pointing back to ms. After he said the flares I have are mental the nurse explained that I can control them by watching temps, stress, fatigue. I know they bring on those flares. So is it safe to say in the 3 yrs I've been on Avonex the ms has not progressed? How do I tell?

[supermum_ms]

Hi and welcome to our little MS community,

Well you've had a totally confusing journey, hard to be confident in any dx's when you've had so many conflicting opinions on what's going on....out of all the neuro's you've seen, "the head neuro at ms clinic at DUKE" is 'more likely' to know MS in every way, he definitely should know MS and be a reliable diagnostic source of 'MS'.

The opinion of any of the other's are less reliable, were any of others that you've seen actually MS specialising neuro's?  I'd be a bit suspicious of any neuro experience or knowledge of MS if they diagnose MS and treat with disease modifying drugs but don't provide the patient with any MS information or additional MS support, somethings not right about it, though coming up with what it could be would just be guessing...    

The Duke MS head honcho had to have some diagnostic rational in dxing 'autoimmune encephalitis' and not MS, autoimmune encephalitis occurs relatively soon after an acute viral infection and is also called Post-infectious encephalitis. It is more common in children than adults and although it can be a very serious illness, it's more usually short lived with a good recovery, so you not being dead doesn't mean 'autoimmune encephalitis' had to be completely wrong.

You said "I have flares about every 2 weeks.slurring, slight walking off balance, extreme fatigue. Could last hour or 2. About every 3 months I have a major attack that lasts 2 days. All of the above plus extreme electric feeling shocks causing jerk motions in arms, legs and chest. I fight extreme fatigue and am on Adderall for it. the neuro treating me says none of these items are related to my ms, that they are caused by psychiatric problems."

IF the neuro that dx'ed you with MS is saying all the above has the only option of being mental health, please RUN and find a better neuro! This guy doesn't 'seem' to know his a@@ from his elbow lol whilst i'd agree that MS doesn't cause exacerbation, relapses, attacks or flare-ups (all the same thing) every 2 weeks and only last a short time of an hour or 2 and it's very unusual for any MSer to experience new attacks every 3 months that only ever lasts 2 days each time....

IF you definitely do have MS, what you would more likely be experiencing are 'pseudo relapses', which are not true relapses and are caused by the amount of physical activity you've done, increase in internal or external temperature (hot baths/showers, summer heat, infections, hormonal temp etc) etc and once you cool down and rest enough, you go back to your everyday issues once again.

If your neuro dx'ed you with MS, why on earth didn't he consider MS pseudo;s or even explain what to expect if your having a relapse...why exactly is he saying it's not MS and it is mental health?

Hope that helps.....JJ