MS & Scoliosis??

[HeatherM]

Hey everyone!
I was diagnosed with scoliosis about 20 years ago (I was only 6). All 3 curves were anywhere from the high 20s to the high 30s. I was put into a brace and my curves stayed the same as long as I consistently wore my brace. I stopped wearing it in 6th grade because I was getting teased a lot. A year later, I had surgery because my curves had more than doubled (Top 50s, Middle 80s, Bottom 60s). Everything has been fine other than the normal aches and pains until recently. I was told yesterday that I have MS. Does anyone know if there is any kind of link between MS and Scoliosis? I read somewhere that there is not, but it just seems strange.

Thanks everyone!

PS... I just recently found this forum and I really wish there would have been something when I was younger going through the whole bracing and surgery process...

[Susie*Bee]

Hi Heather! I just want to welcome you. I wish I had some information about your question, but I haven't run across any connection. It may just be that you have two extreme challenges that are not at all related to each other. Maybe there are others that know something more about this... but it's possible that is why there hasn't been any response yet--

When I first joined the forum in Oct. 2007 it seemed like more kids were posting. Lately the adolescent part seems like it's mostly parents, which is good too. There is a different forum that I think a lot of kids use, called "Spinekids" or something like that. Yes, it's too bad that kids tease and that influenced you, but chances are your curves may have increased regardless, since they changed so much so quickly when you didn't wear your brace. Have you had any problems at all with your fusion in the years since then?

I'm sorry about the MS diagnosis. I know a couple of people who have MS and they have managed to accept and deal with it ok over the years. How has yours affected you so far? What kinds of problems are you having because of it? Keep us updated with how you are doing and how we can help. There are many people here who are good listeners when someone needs to unload their problems and emotional and physical challenges. That, and the information that gets shared, are what makes this forum a great place to be... in a sense, this is "family" that you can tell things to without feeling that you are saying too much or burdening them too much. We care. You are one of us-- and that is a tight bond. Hugs, Susie

[t nizzle]

what's MS? btw heather, thanks for helping me through this brace experience. you're an inspiration

[Snoopy]

Heather,

Have you contacted the MS Society? Scoliosis can be a "side effect" of many different things. In my husband's family, there is a history of Charcto-Marie-Tooth (CMT) and only after my daughter was diagnosed with Scoli, did I find out, through my own research, that Scoli is a side effect of CMT. (CMT caused what is called drop-foot, causes loss of feeling in extremeties and things like that) Somewhere along the line, I was referred to the MS Society and they were very kind and helpful.

Good luck and let us know what you find out.

Mary Lou

[HeatherM]

Thanks for your help everyone! I really appreciate it and will check into to the CMT thing too.

T~MS means Multiple Sclerosis which is a condition that affects your nerves in your body. I started noticing a while back that my right leg would go numb more often but just assumed it was me. I also noticed that my joints were really sore (since I am 26 I couldn't figure this out) and that I was very tired. I didn't pay much attention but the begining of the year I woke up one morning and my vision in my right eye was really blury. It just kept getting worse and the eye doctor couldn't figure it out. Over the course of a few days my vision in my right eye was totally black. I couldn't see at all. 4 doctors and an MRI later I found out I have Retrobulbar Optic Neuritis which is a sign of MS. The MRI concluded that is in fact MS.

I do not feel bad about it or wish it didn't happen to me. I mean, I would love to be a healthy 26 year old but its just not in the plan. I can still do a lot of things the same way and I can still be a Mom which is something my husband and I are wanting so badly!

[pmsmom]

Heather,

Have you contacted the MS Society? Scoliosis can be a "side effect" of many different things. In my husband's family, there is a history of Charcto-Marie-Tooth (CMT) and only after my daughter was diagnosed with Scoli, did I find out, through my own research, that Scoli is a side effect of CMT. (CMT caused what is called drop-foot, causes loss of feeling in extremeties and things like that) Somewhere along the line, I was referred to the MS Society and they were very kind and helpful.

Good luck and let us know what you find out.

Mary Lou

I have read about CMT on another scoliosis group. How does one get a diagnonsis? Is there anything that can be done about it? Do you think it is something that we should bring up to the surgeon when we see him?

Thanks!
Marian

[Snoopy]

Hi Marian,

How does one get diagnosed? I'm pretty sure there's a blood test for some types of CMT, but not all types at this point.

Is there anything that can be done about it? There isn't a cure for CMT, but some people wear braces on their legs or try p.t.

Do you think I should bring this up to my surgeon? You could, but don't be surprised if he doesn't even know what CMT is! Before Jamie had surgery, I took her for 5 opinions. Three of the surgeons looked at me with a blank stare when I mentioned the CMT family history/Scoli connection. The surgeon who did the surgery, sent Jamie to a neurologist (I think) who recommended testing, which Jamie refused. When I mentioned the CMT family history, the surgeon became very interested because of the high degree of her Scoli and her Kyphosis, her surgeon thought there might be an underlying problem.

Mary Lou

[pmsmom]

Hi Marian,

How does one get diagnosed? I'm pretty sure there's a blood test for some types of CMT, but not all types at this point.

Is there anything that can be done about it? There isn't a cure for CMT, but some people wear braces on their legs or try p.t.

Do you think I should bring this up to my surgeon? You could, but don't be surprised if he doesn't even know what CMT is! Before Jamie had surgery, I took her for 5 opinions. Three of the surgeons looked at me with a blank stare when I mentioned the CMT family history/Scoli connection. The surgeon who did the surgery, sent Jamie to a neurologist (I think) who recommended testing, which Jamie refused. When I mentioned the CMT family history, the surgeon became very interested because of the high degree of her Scoli and her Kyphosis, her surgeon thought there might be an underlying problem.

Mary Lou

Thanks! I found your post!

[katej]

I can't believe I am reading this ?link between ms and scoliosis...I feel just awful about it. I am 65 yrs old, had the harrington rod surgery 10 yrs ago, three times because the hardware failed along with the fusion being absorbed. 1 yr later diagnosed with perepheral neuropathy, and 2 yrs ago diagnosed with ms. So they must be related. I am now a candidate for revision and really scared. Has anyone had a good revision? Thanks

[EveD]

This is interesting. I have both scoliosis and MS. I have been experiencing gait problems. Since the walking problems could be caused by either the scoliosis or the MS, I'm not sure how you can tell what is causing the problem.

I'm curious if there is a connection or just coincidence.

[AndreaM]

Hi Eve,

I am discovering that quite a few of us who have had Scoliosis surgery have gone on to have the type of nerve damage you describe. In my own case, the nerve damage has been caused by Vitamin B12 deficiency. As it wasn't diagnosed for 13 years I have considerable permanent problems. It has now gone on to become SACD (Sub-acute Combined Degeneration of the Cord). This is also a symptom of MS and I wonder if some folk are misdiagnosed with MS as they are both demyelinating conditions and so give very similar symptoms.

Please read my thread here:

http://www.scoliosis.org/forum/showthread.php?t=9564

It gives more information about a possible single cause of both Scoliosis and B12 deficiency as well as a list of symptoms which are very indicative of B12 deficiency,

Andrea

[mamamax]

Hi Eve,

I am discovering that quite a few of us who have had Scoliosis surgery have gone on to have the type of nerve damage you describe. In my own case, the nerve damage has been caused by Vitamin B12 deficiency. As it wasn't diagnosed for 13 years I have considerable permanent problems. It has now gone on to become SACD (Sub-acute Combined Degeneration of the Cord). This is also a symptom of MS and I wonder if some folk are misdiagnosed with MS as they are both demyelinating conditions and so give very similar symptoms.

Please read my thread here:

http://www.scoliosis.org/forum/showthread.php?t=9564

It gives more information about a possible single cause of both Scoliosis and B12 deficiency as well as a list of symptoms which are very indicative of B12 deficiency,

Andrea

Hi Andrea - boy, now this is interesting! Dingo should weigh in on this one, I hope he sees this and does. Thanks for the info.