Hi there;
Is there anyone else out there that has RSD and MS? I was just diagnosed with the MS a couple of weeks ago and my head is still spinning. I'm trying to research MS as much as I can - including the forum here on NeuroTalk. I am just wondering if some of the symptoms I have been having - thinking they are RSD - could be the MS. My feet go numb - tingling - pin and needles. I have had trouble trying to stand in the past due to my TKR and the RSD setting in the knee, but lately, I am so wobbly when I stand - I feel like I'm 99! Its almost to the point some days I should really use the walker but my stubborness is using the cane. I am also worried about using the shots for MS treatment - how it will be with the RSD ..the side effects they say could be up to 6 months of flu like symtoms. I am on Methadone, Oxy, Lyrica and Cymbalta already - and have bad days where my stomach turns a little on these. I have found a really good nuerologist and MS clinic that is very informative. They even give a "dinner" class for 6 weeks , once a week, that I can bring hubby to. They give you dinner as they approach MS information, such as the MS society and how they can help, the meds, how MS affects your body, etc. Wouldnt it be great if they had something like this for people effected with RSD?!!! My nuerologist has not had a prior patient with both RSD and MS, so an adventure we will have, I guess. Sorry to ramble - I am just in a down mood at the moment trying to take everything in. It helps just to know you guys are here and will read this. Thanks.

Dear Lindkaye -

What a tough double whammy! I am so sorry to hear about your situation. At least it sounds like you're under good care on the MS front.

The only information I can find on CRPS/RSD and MS is a recent article written by Dr. Robert J. Schwartzman, considered by many (for many years) to be the leading RSD specialist in the county. It's called “Prevalence of Complex Regional Pain Syndrome in a Cohort of Multiple Sclerosis Patients.” Schwartzman RJ, Gurusinghe C, Gracely E, Pain Physician, 2008;11:133-136 (multiple sclerosis patients are at a higher risk of developing complex regional pain syndrome than the general population). I've attached a copy of the article for your reference. Although noting the limitations of the study due to it's small size, the authors offer one interpretation that might be valuable:

To date, only one case report addresses CRPS as a possible complication of MS. The authors suggest that the formation of a syrinx, the result of a degenerating plaque, disrupted the sympathetic flow in the cervical cord leading to CRPS. Recent experimental and clinical data supports the hypothesis that neuropathic pain caused by peripheral or central nervous system injury can be initiated and maintained from activation of immune cells and their inflammatory mediators. We suggest that the higher than expected incidence of CRPS in MS patients is related to demyelination of spinothalamic or other pain pathways rather than both illnesses sharing a common immunological pathogenesis. [Emphasis added; citations omitted.]

Of course, in this study, as well as the prior case report the authors referred to, the RSD was treated as a complication of the MS, whereas in your case, the RSD came first.

You mention that your neurologist hasn't had prior experience with a patient with both illnesses. You might want to show him or her this article with the suggestion the s/he contact Dr. Schwartzman. For what it's worth, even though I live in So. Cal., I saw him a number of years ago to see if I could go to Germany for the "high dose" ketamine treatment, but that didn't work out due to complicating medical conditions. That said, I know the man to be a gentleman as well as a scholar, who wouldn't hesitate to take your doctor's call. I'd give it a shot.

Good luck,

Mike

Attached Files

Prevalence of CRPS in a Cohort of MS Patients - Schwartzman et al - Pain Physician 2008 v. 11 at.pdf (118.6 KB, 278 views)

Mike - thank you so much. Not sure how you found this - must have took some pretty good digging on the internet! I think my new nuerologist is pretty open minded, so I will definately print this off and give to her. She is running a study on MS and asked if I would participate as they are trying to get patients in on the study before they start the medications. So I willingly gave up 10 viles of blood! Its all for the good if they can figure out anything on this disease. I will mention calling Dr. Schwartzman and see if she will. Maybe there is a connection between the two - there's a reason somewhere that I was lucky enought to get both! hehe. Thanks again.

Dear Lindkaye -

It's my pleasure if I was of any help. And the short answer is that I cheated. I went to the single greatest resource for information on CRPS, the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html, scrolled down to the heading "CRPS and other conditions" and there it was.

If you're up to it, you should really check out the RSDSA site from one end to the other. There's an amazing amount of good stuff in there.

Let me know if there's anything else I can do for you in terms of pulling articles and the like. (Or anything else for that matter.)

Mike

I'm so sorry to hear that you have been diagnosed with both RSD and MS!! I really hope you find something that can help you and relieve some of your symptoms real soon and I am keeping you in my thoughts and prayers!!

I have read the article that Mike posted before and it really made me wonder whether or not there is a link between RSD and MS. My nanan had Progressive MS and had a lot of the symptoms that I have so it has always been at the back of both mine and my mums mind - although no doctor has ever tested for it and just put the symptoms down to the RSD.

My nanan had the pins and needles and tingling that you are having also. Her Neurologist told my mum and grandad that it was one of the commonist signs of MS and that is usually the symptom that makes Doctors check for it. I hasve the tingling also but my doctor just said it was nerve damage from the RSD.

I really wish I could help you more but I know there is nothing I can do unfortunately. Just know that if you have any questions about my nanans MS, I am here for you and will be happy to help if I can!! My nanan passed away 7 years ago now unfortutnately but I can still remember a lot about what she went through!

Take care - i'm thinking about you and keep us updated when you can!!