Anyone with similar MS Symptoms/Journey?

[suelew]

I was diagnosed in 2002 and have been on Copaxone since 2004. My symptoms started as mostly sensory and were mild compared to what I have going on now. I now have major burning and numbness in my legs, feet and "saddle" area and each time I walk or stand I get pain and a terrible "heaviness" in my legs. The only thing I can do is sit to relieve pain but sitting is also very uncomfortable with the neuropathy in my saddle area.

My brain MRIs have never shown plaques, but the cervical spine has always shown them. I also have plaques on my thoracic spine. The lumbar MRI shows degenerative discs but no plaques. I have seen a neuro surgeon who said there is nothing that he would suggest doing for the degenerative discs, that all I can do is continue with treating the MS. I also had a blood test done to see if I have Devics disease (neuromyelitis optics) and that came back negative.

I am wondering if the Copaxone is really doing anything for me as I read that it is based on how the brain MRIs look and mine are always fine. I definitely have been getting progressively worse too. I'm diagnosed with RRMS yet it doesn't seem to be that I ever "remit."

I have a symptom at times that feels like "pop rocks" inside my body. Do you remember the candy pop rocks?...how it made little "explosions" in your mouth when you ate it? I feel like I have electrical sparks going off throughout my entire body. I especially feel this when a dream wakes me up at night. When I get up I feel like a robot trying to walk. I'm stiff and have these electric spasms going off inside my body.

I have been happy with my neurologist for the most part but I'm feeling led to seek another "opinion." My current neuro diagnosed me with MS AND degenerative disc disease. Usually he just gives me more meds to take or increases dosages and keeps me on Copaxone. (I am also on Cymbalta for the neuropathy but don't know if it's really helping. And I take prescription Ibuprofen to take the edge off the pain.)

I guess I'm just trying to get some advice and encouragement from those who really know what I'm going through and are experiencing some of the same symptoms.

Thanks for listening!

[jreagan70]

Hi suelew:

I was diagnosed in 2002 and have been on Copaxone since 2004.
I have been happy with my neurologist for the most part but I'm feeling led to seek another "opinion."

If you were diagnosed in 2002, it's well past time for you to get a second opinion.

My brain MRIs have never shown plaques, but the cervical spine has always shown them. I also have plaques on my thoracic spine. The lumbar MRI shows degenerative discs but no plaques. I have seen a neuro surgeon who said there is nothing that he would suggest doing for the degenerative discs, that all I can do is continue with treating the MS. I also had a blood test done to see if I have Devics disease (neuromyelitis optics) and that came back negative.

It's possible for someone to have MS lesions in the spinal cord only and none in the brain. It isn't the common presentation, but it does happen.

Your neurosurgeon is being reasonably cautious about disc surgery. You could go through risky surgery and still have all of the same symptoms because of MS. And if something goes wrong during or after surgery, you could end up worse than where you started.

The tests for neuromyelitis optica (NMO) have a fairly high false negative rate -- about 30% -- so a negative test does NOT rule out NMO. (Does your neurologist know that?) With a negative test result, a diagnosis of MS vs. NMO has to be made based on other factors. That would be a reason for you to get another opinion about your RRMS diagnosis.

I am wondering if the Copaxone is really doing anything for me as I read that it is based on how the brain MRIs look and mine are always fine. I definitely have been getting progressively worse too. I'm diagnosed with RRMS yet it doesn't seem to be that I ever "remit."

Brain MRIs are used in judging how well a medication (in your case, Copaxone) is working because most people with MS have brain lesions. If you don't have brain lesions, then that doesn't apply to you.

But that doesn't mean a brain MRI is the ONLY way to look at lesions. Since your brain MRI can't be used to look at lesions as a way of judging how well Copaxone is working, your neurologist has to use your spinal cord MRIs to see if there has been any effect on lesions.

How have your spinal cord MRIs changed over time? What does your neurologist say about progression of lesions there?

Copaxone might NOT be doing anything for you. Copaxone is one of the three MS medications with the lowest rate of effectiveness. Since you were diagnosed, several medications with better effectiveness have become available. Has your neurologist talked with you about any of them?

Getting current, reliable information about MS medications is another reason you should be getting another opinion.

You didn't say anything about whether you've been having relapses or what they've been like. You mentioned only that you don't seem to "remit."

Relapses vs. no relapses means something important in MS. Remission vs. partial remission vs. no remission also means something important in MS. After 13 years, your MS has established enough of a track record for you and your neurologist to know whether you have relapsing-remitting MS or primary progressive MS. It's also enough time to know whether you have progressive-relapsing MS, or whether you in fact started with relapsing-remitting (as most people with MS do/did) and have moved into secondary progressive MS.

None of the MS treatment medications have shown themselves to be effective in progressive forms of MS. So if you are primary progressive or have moved into secondary progressive, Copaxone has no record of effectiveness, and the MS guidelines indicate that there's no reason for you to be taking it.

So based on questions of what form of MS you have and whether there is a more effective MS drug you could or should be taking, it sounds like you're ready for a second opinion.

To find another neurologist, you can check the website of the Consortium of Multiple Sclerosis Centers (www.mscare.org). On the left side of the home page, select Directories > MS Centers. Enter your country and state to find MS centers in your state that follow CMSC guidelines.

You can also contact the National Multiple Sclerosis Society (www.nmss.org) to ask for names of MS-savvy neurologists in your area. Bear in mind that the NMSS doesn't "recommend" neurologists. They only pass on contact information, and you may or may not have a satisfying encounter with the neurologist you choose. But it can be better than searching for a new neuro from scratch.

[suelew]

Thanks JReagan for your reply. Interesting info about determining the type of MS I have. I've always been unsure about the RRMS diagnosis because my symptoms don't ever go away (remit). They just have intensified and new ones have started.

My spinal MRIs do show changes. Especially the lumbar ones. I'm getting very frustrated because my legs are getting bad to the point that I can hardly walk.

My current neuro did say that he might send me for a second Devic's disease test since it can come back negative the first time.

I definitely will be getting a 2nd opinion. Appreciate the links you included to search for neurologists in my area.

Thanks again.

[MarkLavelle]

The lumbar MRI shows degenerative discs but no plaques. I have seen a neuro surgeon who said there is nothing that he would suggest doing for the degenerative discs ...

This sounds totally bogus to me. Your new sx sound very much like the kind of things caused by lumbar disc degeneration/bulges. I know this from personal experience...

I strongly recommend that you take your lumbar MRI to a physiatrist for a second opinion.

[jreagan70]

My spinal MRIs do show changes. Especially the lumbar ones.

It's apparent that, in referring to the changes in your lumbar MRIs, you're talking about your spine -- the bones and the discs -- and not your spinal cord, which extends only a very short distance onto the lumbar spine and is affected by MS.

When there are MS lesions higher up the spinal cord that can cause the same signs and symptoms as disc problems lower down, it can be difficult, or even impossible, to determine which issue is causing the problems or if anything can be done to relieve them.

What in particular makes you feel that your problems with walking are more from disc issues than spinal cord damage from MS? What have your doctors said about it?

For your disc issues, it can be worthwhile to get more opinions from a physiatrist, orthopedist and neurosurgeon. It might take more MRIs, nerve conduction studies and EMGs to see if disc surgery might bring you any relief. For example, surgery might give you some relief from pain, but if your trouble with walking is coming from spinal cord damage from MS, your walking might not get any better.

If the first neurosurgeon you saw doesn't want to consider surgery for your disc issues, get more opinions. But you'll still have to be the one to decide if the benefits might outweigh the risks for you.

My current neuro did say that he might send me for a second Devic's disease test since it can come back negative the first time.

Because of the nature of the available tests, an NMO test can come back negative EVERY time, no matter how many times it's done. There are people with classic NMO who consistently test negative. That's why it's important for you to get an opinion from a neurologist who actually understands NMO.

It sounds like you have your work cut out for you in finding specialists to give you a second opinion
about MS and your spinal/disc issues. Best wishes on your journey.

[suelew]

Thanks for responses! Yes, I certainly do have my work cut out...BUT I have made an appointment at a neurologist for this Wednesday. (Yes I got in quickly!) This neuro is highly recommended by a friend who has MS that works with my daughter. And my daughter is going to go with me which I am so thankful for. I am getting all my "ducks lined up" with MRI CDs and reports, etc. for the appt. I'm having my daughter read these posts too so she can help me explain everything. Orally explaining things can be a real challenge for me and I need to make the most of this appt!

My latest lumbar MRI shows that I have degenerative changes and bulging L5-S1 and L4-L5 but report does state "no evidence of demyelination disease." However, my Cervical Spine MRI report states "4 foci of abnormal signal within cervical spinal cord and these lesions likely represent demyelination disease." Also in reviewing all my MRI reports in detail (which my neuro never did with me) I see the Cervical Spine report says "also notable is a lesion on the right medulla." (That's the brain, right?)

I guess since my legs are so bad I've attributed it to lumbar issues since the lumbar area is right above my legs and I do have degenerative things going on and I get pain in my lower back. Best way I can think to describe my legs is that they gradually become like "spaghetti" after walking and I'm like the Scarecrow in "The Wizard of Oz" when he first tried to walk and stumbles all over because his legs don't hold him up properly.

It's certainly all a big mystery with me and all symptoms seem to be getting worse. I so hope to find some answers and hopefully some relief.

Thanks again for listening!!

[jreagan70]

Thanks for the update! I hope things go great at your neurology appointment. If you'd like, let us know what happens.

[LoraineF]

Lumbar spinal stenosis

I'm new to the forum (was just browsing, actually, when I came upon this thread), and will intro myself properly shortly, but I might have some useful info to share.

I was dx with RRMS 8 years ago, but have been dealing with lumbar spinal stenosis this year - completely unrelated to the MS. Severe lumbar issues resulting in neuro deficits, some of which appear similar to MS (e.g. leg weakness, spasticity, bladder retention). I recently had decompression surgery with fusion at L4-L5 to take the stress off the compressed nerves, and it has helped a lot.

Lumbar spinal stenosis is not uncommon, and is usually an outcome of osteoarthritis and/or disc degeneration. Google it and you'll find oodles of info out there.

And see a spinal doctor or neurosurgeon for a dx of your MRI, with stenosis in mine. Good luck!

[suelew]

Thank you LoraineF for sharing about the spinal stenosis. It's much appreciated. I will report back on what I find out!

[suelew]

My appt went well. The doctor wants me to get updated thoracic and lumbar MRIs. He thinks I might have lumbar spinal stenosis! (Along with the MS.) He won't commit to anything until he sees the MRIs though. He gave me a prescription for Zorvolex too which is stronger than Motrin for the pain I have. I'm still on the Copaxone shots for the MS. He feels it's still working for me. He doesn't think I've got NMO as my MRI's and symptoms don't show that. I'm kind of relieved that he doesn't think my MS is the cause of my worsening leg symptoms. I follow up with the doc after the MRIs are done. He and his nurse practitioner spent a lot of time with me. Thanks again All for your comments!

[suelew]

Results of MRIs and followup appt

I had a follow-up appt after the MRIs that checked for the spinal stenosis. Wasn't news I thought I'd hear. (Thoracic and lumbar MRIs were done.) Neither showed stenosis. The thoracic one showed more spinal lesions. Doctor thinks my worsening issues are definitely spinal cord related. He wants me to go off Copaxone and go on a different DMD now. He gave me info on 3 drugs to help me decide...Tysabri, Lemtrada and Gilenya.

I am thrilled to be going off the Copaxone. My body is full of lypotrophy from years of shots. But I am very nervous to go on another drug. I am fearful of the unknown, of side effects, BUT excited to go on something else that may do something good. I've heard that some symptoms may even get better, i.e. my numbness, burning.

I am looking into it all now and of course cost is a concern too. I am on Medicare and have Florida Blue Advantage Plan.

Any advice, info is greatly appreciated!! Thank you All!

[Echo2099]

Suelew

Check out the Medicine and Treatments forum, you will find a lot of info on the three DMDs you mentioned. It sounds like your neuro is working with you to get things under control and he should be able to answer any questions you have about the Meds.

For ME, I have been thrilled with Tysabri. I have been on it for more than 5 years and JCV titre is still very good.

With Tysabri, other than the little hole for the infusion, I do not even know I have had the infusion. I haven't had side effects of any kind, and it does seem to help a bit with mobility. I have missed a couple of infusions because of being out of the country, and I have noticed a difference.

I also take Ampyra, and it helps a lot.

Of course this is MY experience and yours and others may differ!

Search the the boards for the DMDs you mentioned, and you will find a lot of people discussing their experience with all the DMDs!

Good luck with whatever you decide!

[suelew]

Thank you for the reply Echo2099! I will ck out the Medicine and Treatment forums. I tried Ampyra but it actually intensified my symptoms of burning, tingling and numbness so I stopped it. It's encouraging to hear you had no side effects from Tysabri. Does your MS show plaques on brain MRIs? My MRIs do not show any brain plaques. All plaques are in my cervical and thoracic spine.

[Echo2099]

Suelew

I have both brain, thoracic, and lumbar spinal plaques. However, nothing new or enhanced since I started Tysabri. I get another MRI in October, so I hope that trend continues.

Take some time to read the posts about all the DMDs, and maybe research the web for info, then you and your neuro can make a more informed decision regarding what is best for you!