Differences in diagnosis

[hreynolds29]

Anyone heard of acute demyelinated encephalomyelitis??!! Just curious about it because I had a cold and then everything went numb a week or so later, got diagnosed with MS, now my diagnosis changed to Devis (NMO), just having a hard time accepting this and believing it...

Been researching more and saw the above condition and it does say it typically appears in children but can in adults as well and happens after a viral infection...ugh I'm driving myself crazy now lol. I just want to make sure Im not going misdiagnosed.

[SarahL2491]

they never bother with the lumbar because lesions don't form there.  I specifically asked my neuro, because one was never done of my lumber (darn) and that's what he told me, but in retrospect, it would have helped me with other back problems, because with my pacemaker, the company refuses to sanction an MRI

[Sailorsong]

Kyle is right from what I have read also. It has to be immediate family for the increase in chance of MS. MS does tend to run in my family so I have read a lot about this factor. My father had MS, I have MS, My brother was just told he has MS though not officially DX'ed yet, and his daughter probably has MS also.

Dennis

[kwarendorf]

I think the familial component has been limited to "immediate" family; brother, sister, mother father etc. I'm not sure I would worry about second cousins.

Just one man's opinion...

Kyle

[hreynolds29]

What is also weird is that my second cousin on my mothers side has MS and I just found out my second cousin on my dads side was diagnosed with MS too....

[hreynolds29]

Nevermind I think I see what you are saying now lol...DUH!

[hreynolds29]

I guess what I mean is they changed the diagnosis because of the long lesions on my upper spinal cord that formed...

[hreynolds29]

So with NMO there are no lower lesions?? With MS I thought the lesions don't go any more than 2 areas (T8-9) Can MS lesions cover more areas?? (C2-6)???

Yea I think Im going to go to a top MS/NMO specialist I found in Houston, TX my hometown, will give me an excuse to visit family too HA!!

[SarahL2491]

There are no lesions in the bottom of the spinal cord, only in the cervical and thoracic.

Perhaps you need a 2nd opinion for another neuro…..

[hreynolds29]

Thanks Karry!! Me too!! :)

[hreynolds29]

Yes I have read a lot on the mayo clinic, watched their videos and the guthy-jackson foundation and I am apart of a facebook group page for NMO. Yes my new lesions cover C2-C6 vs with my first MRI just T8-T9. As of now this whole thing is hitting my spinal cord. I guess I just get spectacle because when I read how others were hit with their first episode vs mine it makes me think wow they had some serious life changing things happen and I'm just getting hit with fatigue and numbness so I am assuming transverse myelitis. I know I know everyone is different I just need to make sure I am getting treated for the right thing :/...this is a tough pill to swallow, wanna make sure everything is looked at and I have a few opinions.

[doublevision1]

I would definitely get a second opinion considering the implications for treatment and the fact that MS and NMO can closely mimic each other.

Is it the nature of the specific lesions that he says are classic for NMO ie: do they extend over three or more vertebral segments? This would definitely point more to NMO than MS. It is unfortunately such a tricky diagnosis. One may have optic neuritis, transverse myelitis, or both. So not having vision issues doesn't preclude this diagnosis. The NMO-IgG antibody test is tricky also, since it has a very high rate of false negatives.

The Mayo Clinic has done extensive research on NMO and are the world's leading experts. They have great info on their website. If you haven't come across it yet, here's a link:

http://www.mayoclinic.org/medicalprofs/neuromyelitis-optica.html

[karryon55]

I thought Transverse Myelitis was the condition that has lesions that are long & large. I know someone with this condition who originally had an MS dx also.

If I was you I would get a second opinion because you really want to be sure. I hope you get covered for the Rituximab.

Take Care......Karry.

[hreynolds29]

Yup, about 90% of my body is numb but the new lesions on my upper spinal cord cover C2-6, which he said are more than what MS lesions typically cover.....in August when I was diagnosed I had a lesion at the bottom of my spinal cord that covered 2 areas and then a few on my brain.

UGH I wish you were, I like your reaction better than his lol. I think I'm going to get a second opinion...

[kwarendorf]

I'm a bit confused. You have no vision/eye issues, do have numbness and your neuro thinks it's NMO? That doesn't make a lot of sense to me but I'm not a doc...

Kyle

[hreynolds29]

*ran....darn it lol

Oh also so far at this time no optic issues.

[hreynolds29]

Well, I tested negative for the antibodies test they run but according to my nuero the lesions on my upper spinal cord are classic nmo lesions...they cover about 5 areas...ugh right now my chief complaint is fatigue and numbness...boy I really wish they were wrong....ugh.

Like we talked about the other day Im still waiting to hear from my insurance to see if they will cover the Rituxan.

[hreynolds29]

I see...okay well definitely don't have nausea or fever and I didn't when I got sick with a cold of sinus infection but I think that is the best line I have heard Alex!!

"My Psychiatrist says denial helps us not lose it when we have to accept something really traumatic"

Just trying to accept this NMO diagnosis is a tough pill to swallow. I was perfectly fine being told I had MS LOL!!!

[PeninaD]

ADEM, Acute Disseminated Encephalomyelitis.
That is what my daughter was first diagnosed with.

[kwarendorf]

ADE symptoms include fever and nausea. It also tends to happen all at once, rather than over time as is the case with MS. If you have lesions that enhanced and some that didn't on you MRI than it's not likely ADE.

As to Devic's (NMO) if you have symptoms that effect parts of your body other than your eyes/vision it's not likely Devic's.

Kyle

[HVAC]

It is rarer and your Neurologist would know the difference. I know it is hard to accept. It took me several years for my MS to really seem real. I am the same about my Cancer. I still wake up thinking it is all a bad dream. My Psychiatrist says denial helps us not lose it when we have to accept something really traumatic.

Alex