Dx'd Possible MS...looking for similar exp?

[A2KB]

Hi Everyone,

Just a brief history, I'm 36-years-old, married, pretty healthy, but 2 years ago I developed numbness on the left side of my face/burning pain. I went to two separate neuros who dx'd me with "complex migraine" (I DO get migraines once in awhile, sometimes with numbness/aura...but only for 30-60 minutes before the headache would start, etc. not ongoing without relenting). However, the numbness/pain went away after about 6 weeks. 4 months later the right side went a bit numbish, but not nearly as bad as the left side, and resolved in 2 weeks.

My neuro then ordered two separate head MRIs (including a tesla 3/trigeminal scan), and full blood work for ANA, NMO, Sjougren's, HIV, Lyme, etc. All blood tests were normal, both MRIs were normal.

So I go about my business, then this past December (2011), I wake up with my left toe numb and pins-n-needles. Fast forward to the next weekend and I am numb to my waist with a burning pain around my middle. I am admitted to the neuro-inpatient ward at the hospital for 5 days with IV Solumedrol. I have two more MRIs - full spine and head, I have a lumbar puncture, VEP test, and full blood work for autoimmune disease, nutritional deficiencies, etc.

Everything is 100% normal, I am healthy, except for the spinal MRI - it shows a lesion at T8, and I am dx'd with transverse myelitis - ideopathic in nature as there isn't anything in the CSF or elsewhere.

I start rehab and take neurontin for my leg pain...I finally get in to see a neuroimmunologist. She does a full exam and takes a history. Apparently I am missing some key things that are usually found in MS (multiple lesions or lesions in the brain, no banding in the CSF, I am missing Babinski's sign.) I have been dx'd with "probable RRMS" and am on Copaxone.

Any other atypical presenters? I both dread the dx, but also want to get it over with so I don't have to worry it's something worse...I like to hear other people's experiences. So far, I'm not stressing about it much (just once in awhile late at night...you know how it is) as I figure I'm doing as much as humanly possible to avoid any potential relapses with the Copaxone, getting enough rest, vitamins, exercise, etc.

[A2KB]

Thanks folks, it is good to hear that I'm really NOT all that odd...I've been trying not to obsess about things and just go about my business (if a bit more mindfully/appreciatively than before!)

I have a regular neuro who I see once, maybe twice a year for migraine-management, and a MS specialist I've seen once, who made the "Likely dx". I love my regular neuro, but I don't like the MS specialist (but she seems to be knowledgeable/is overseen by an ex-Mayo-Clinic MS Guru, so I'll deal with her truly-horrific bedside manner) I did try to get in to see "The Guru", but wasn't able to *drat!* :O)

I had a 4-month MRI of my spine recently to "see how the lesion is cooking" and it looks the same as in December, but with less inflammation *yay!*. MS Neuro said I'll get yearly MRIs of head/spine until further notice and we'll go from there.

So yeah, I guess it's just a matter of time before "official dx", and you're right - I am doing everything the same, that I'd do with that bit of writing on my file~

[JaneK1975]

I do agree with you, though, Sidesteps, that the symptoms here sounds like attacks separated in time.

[Sidesteps]

Typo's alert:  

Correction.
"Your symptoms don't really sound atypical to me. You had TN then followed with spinal cord involvement. That doesn't really sound atypical to me. It sounds like two flares separated by space and time."

I also agree with Jane - at this point the diagnosis is really all that is missing here. They are treating you with DMDs and sound like they are monitoring you closely.  

There are some great articles in the health pages as well that might help you understand some things better and why I said what I said. The health pages are on the upper right side. LOTS of good information there. :)

[Sidesteps]

Hi and welcome!  

My question:  Is your Neuro a MS Specialist? It is good that you have started treatment but I question your diagnosis a bit when there seems to be two clear attacks in two years. It might take a MSologist to take a leap in diagnosing you based on your clinical symptoms vs MRI lesion load.  


I had "atypical" presentation --- my symptoms started with muscle fasciculations and sleep starts (myoclonus) then two weeks of swallowing difficulties. They considered it atypical because muscle twitches and jerking are supposedly not commond with MS, at least that is what I was told by a couple of general Neuros. Two months later, I was a mess - with widespread symptoms and a lot of the more common symptoms but MS doesn't typically hit "multiple areas." It did me.

You symptoms don't really sound atypical to me. You then followed with spinal cord involvement. That doesn't really sound atypical to me. It sounds like two flares separated by space and time.

It also sounds like a lot of us who started with cranial nerve involvment with either Trigmenal Neuralgia or Optic Neuritis. I have been told repeatedly that cranial nerve lesions are very difficult to see on MRI's and thus they really need to look at the symptoms, history and any supporting diagnostics to determine the location of lesions.

I had right sided facial pain (orbital) and numbness surrounding the same eye for 10 months... well, the pain lasted 10 months. The numbness is still with me. They thought it was a migraine at one point too! Ha! I had never had migraines and certainly didn't have one that last every day for 10 months. ;) I had been repeatedly checks for Optic Neuritis but my MSologist finally told me it sounds like a "cranial nerve irritation". That cranial nerve was atypical TN. (I had constant nagging pain.)

I have now had Optic Neuritis and can feel the difference in the two pains. They are similar but there are some differences.

I also do not have a positive LP. The determination is that they have caught the disease early enough that it's not showing the banding yet but who knows. It is not a requirement for MS diagnosis. It's simply the "easy button" for some.

I am not sure what "normal" is for MS anymore. We all seem to have our own atypical stuff that seems to go with the typical stuff.

Anyhooo --- welcome!!! :)

[JaneK1975]

Hello and welcome to our forum! I'm 36 as well, but my story is a little different than yours. Some of my symptoms were similar (facial numbness, numbness and tingling in other parts of body), but my MRI's and LP showed classic MS signals, so I got a diagnosis at my first major relapse instead of having a CIS or transverse myelitis diagnosis first. After the MS diagnosis, I went on Copaxone and started eating and resting better, just like you.

It sounds like you have a good doctor who has provided access to the necessary meds, but just hasn't given you the official "MS" title. I know from a psychological and emotional standpoint it's easier to move forward with an official diagnosis, but I'm hoping I can offer you some comfort in knowing that it sounds like the the diagnosis wouldn't change anything as far as what you can do to fight back.

Is your doc is scheduling regular MRI's to see if any new lesions pop up (annually, maybe)? If he/she is, then I think everything is being done for you that possibly could be done, regardless of the MS title (or lack thereof). If not, then that might be what you really want to to focus on rather than the wording in your file, because that would be the most important thing as far as making informed decisions down the road. You need to know if more lesions are appearing over time in order to know 1) Is it MS?, and 2) Is the Copaxone working for me? I know you talked about it above, but I'm curious now as to the dates of each of your MRI's. Can you share a little more?

I know it's rough, so I don't mean to minimize your feelings - I'm just hoping to provide some comfort. I've had my diagnosis for several months and it still freaks me out in the middle of the night sometimes O_o

Best wishes,
Jane

[figuerpa]

I can' t say I have a similar experience but I can say that not all lesions will show up on MRI's right away some of them take time to show. I only had one O band in my LP at the time I had it done so that was considered a negative test. I had a couple lesions in my head and two in my spine but the ones in my head werent conclusive of MS. So went on about another year had more MRI's and finally my neuro said it was MS. Took another year to start MS meds because he wanted to see more activity due to the fact that I was doind so well.

Everyone is different, be glad that your neuro started a DMD and didn't wait like mine. When I went back I had 4 new lesions and had I started the medicine there may have been fewer.

Paula