Has anyone else been diagnosed with MS without having lesions on the brain? I have several lesions on my spine. 2 of which are fairly large. I've asked me neuro to explain to me what we can do to facilitate recovery. He's at best, very very vague. It sounds to me that he's trying to tell me there is nothing I CAN do. That's terrible because I'm in considerable pain and I'm having some respiratory issues too.

If anyone can give me any idea of what is "normal" for spinal lesions and of course any ideas of what I can do to feel better. The steroids are no help so far....I'm supposed to start Copaxone next week, but from what I understand, that only puts some time in between attacks. What the heck do I do right now???

By the way, I've been searching for another neurologist in the meantime that may have more experience with MS. I think this guy is a little green and he obviously hates being the "bad news" guy.

Thanks in advance!!!!

Hi Misti and welcome to Neurotalk.

I started my MS Journey with lesions only in my spine. He started treatment right away.

Unfortunately, I now have some brain lesions. Most of my problems are my legs and back.

There are alot of people here who can offer great insights.

Make a list of your concerns and take them with you on your next doctor visit. Good luck and looking forward to more of your posts.

Misti, I have been told the same thing, and all of my significant damage is in my spine as well.

The first consideration with only large spinal lesions, is that this is actually Devic's disease, not MS. Some professionals regard Devics as just a different strain of MS . . . but more and more evidence is pointing towards Devic's being a different disease process all together.

It may take time for them to figure this out though, but ultimately they will be looking for LARGE spinal lesions, with no (or few) brain lesions, and often ON occuring somewhere along the way. Those are the main considerations for a Devic's dx.

Either way, the available treatment options would theoretically be the same . . . CRABs, Tysabri, steroids, etc.

If this is MS, then the CRABs, etc. may help ward off "future" BRAIN lesions. I have had almost 18 yrs with this disease though, and I still don't have many brain lesions. The disease process, for me, has mostly centered in my spine . . . so all those years with a disease modifying drug would have been a waste of time, money, side-effects and risks (from side-effects of these potent drugs).

When it comes to spinal lesions, we don't have any real options. As I've come to interpret things, spinal lesions are not "inflammatory" (like brain ones). Steroids, CRABs, Tysabri, etc. are meant to try to control this inflammatory process in our brain . . . but have not proven very successful on our spines.

The BEST course of treatment that I have found for spinal lesions, is to avoid infection anywhere else in the body, eg. bladder, tooth, bacterial, flu, etc. This seems to be our best defense for not stirring up our spinal lesions.

If I was able to, I would probably try Minocycline, which is used off-label for MS. It is an antibiotic, which may help control infections. Unfortunately I am allergic . . .

Cherie

PS . . . I use Low Dose Naltrexone, which is off label for MS too. It has helped considerably.

Thank you for the advice. I'll definitely be taking this to my appointment at the MS Clinic in October.

Due to the size and concentration of the lesions, my neurologist did run the blood test to check for Devics when I had all the other fun tests (blood draws, spinal taps, etc.) Luckily, it came back negative.

I keep hearing about LDN. I need to do some more research. I'll also check into minocycline. Thanks again!!

Have a good weekend.

[QUOTE=Bannet;352930]Hi Misti and welcome to Neurotalk.

I started my MS Journey with lesions only in my spine. He started treatment right away.

Unfortunately, I now have some brain lesions. Most of my problems are my legs and back.

There are alot of people here who can offer great insights.

Make a list of your concerns and take them with you on your next doctor visit. Good luck and looking forward to more of your posts.

[QUOTE]

Thank you for the kind words. I appreciate the input. Did you start having problems in your legs and back when you only had spinal lesions or did it get worse with the brain lesions?

Hi Cherie,

i live in vancouver also...re: spinal lesions...are they detected in a thorasic, lumbar MRI or both? Specific 'MS' lesions weren't detected in my brain MRI/but i've had many MS symptoms for roughly 5 months...including some in years prior upon reflection. Re: LDN what pharmacy/doctor?

thanks

jack

Hi Jack,

Lesions can be found in the C, T or L "section" of the cord, BUT all (larger lesions) would be noticable by having a C & T MRI, without contrast. (In adults, the L part of the cord is housed in the T area of the spine, so those lesions would be detected in a T-spine MRI).

Do you have a dx? Did they do a MRI of your spine at all? If they did find lesions there, have you been tested for Devic's Disease?

I get my LDN from my GP because when I went on it originally, the neurologists out of UBC wouldn't rx it. Now they will though, and most people attend UBC Research Center, so you should be able to get a rx from any of them there.

I use a compounding pharmacy in the valley (which I will pm you if you get a rx and want the name) because he is the most reputable and experienced in the lower mainland. I get mine in liquid form too, due to sensitivities to fillers in almost any med, so I get the PURE powder. That method is a little more fussy (needs to be refrigerated, etc.), but it works best for me.

Cherie

yes... I was having neurological symptoms, but the brain MRI was negative.

except for a bout of Optic Neuritis in 1988, all my lesions were spinal.

so, they were looking at Devic's as a possibility for me...

Devic's syndrome

http://www.mult-sclerosis.org/Devicssyndrome.html

Differences between Devic's Disease and Multiple Sclerosis

In well-established cases of Devic's disease, it is usually possible to accurately distinguish it from MS. However, early in the course of these two conditions, it may be difficult to definitively separate these two conditions. The distinction is important to ensure the most appropriate treatment. There are several important differences:

http://www.mayoclinic.org/devics-dis...ut-devics.html

they were calling what I had... "Possible MS" for a while, then "Probable MS"

but... after five years, brain lesions finally began to appear, and I got a definite diagnosis of MS... and Devic's was ruled out.

it's now almost 20 years since the first ON exacerbation, and I am SPMS (Secondary Progressive MS)

welcome to NeuroTalk, and I hope you find as comfortable a home as I do... this is a great place, with wonderful supportive people.

hello and welcome,

i think getting a 2nd opinion from an MS specialist is a great idea.
never hurts.

i'm on copaxone also and have been fairly stable.
i can't speak about the spinal lesions but i know others here can.

this would only be an assumption...if you have MS i believe it's best to be on an MS med to help stop progression and delay disability. i have brain lesions but also have spine lesions. c-spine to be exact.

it can take 6-8 mos for the copaxone to start working in your body.
i hope you will feel better soon.

please keep us posted.