RDS / CRPS can anyone give advise

[twist330]

Hi all I have posted this before but under a different title and thought I may get more help with a new post. So Sorry for boring you it's a long one.

I have been seeing a Neuro, this is the background info Sept 1st last year while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle the elbow specailist thought it was carpel tunnel, a few weeks past and it was my whole arm, a couple more weeks and my head was getting the same feeling, I was also incredibly tired, and had start to twitch.

So I went to my GP who sent me to see a neurologist.  I had many tests:- LP, 2x MRI, SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. And a quesrionable reaction on my right foot reflex. I had been told  about 6 months ago that the symptoms I was experiencing were not connected to the elbow break.

By the end of January all my limbs where tingling and had a feeling of intense preasure. By April my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!

With no answer to the situation, I suggested that prehaps we are looking at the wrong area of medicine up to this point I have never had any blood tests. So he said he would refer me to have a general medical assesment.
My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems) so my expectations were not high.

So I was quite shocked to come out with a DX, at least I think I have.

Firstly I had the blood tests with out even seeing the Dr.  I was very impressed with the Dr. at this point, he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story  again and then told me I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it. I new nothing about the condition so was really stuck for any questions I should ask, in honesty he had completley caught me off guard.

I nearly fell off the chair when he said he would right it down so I can google it!

Having done a bit of googling I am quite sad that for the best out come it should have been treated within 3 months of the first symptoms. It looks like I may have to live with it for the rest of my life. Having said that although there are similarities in the symptoms listed, I have to say I'm not 100% convinced that this is the true answer, although the Dr did say this would be the case. I am however very pleased that I have been given some medication that may help. Something is better than nothing in my book.

I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. So  what have I got to lose?

Having googled RSD the only symtoms that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms the Dr did say that many people experience it in different ways. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch.

Of course now I have many questions but I won't be seeing the Dr for anoth month. So I am trying to find out more about it, like I said I'm not 100% convinced. But I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain and I am worried what the future holds.

I wondered whether there is anyone that has been mis diagonosed with RDS before MS?
Also if anyone knows if the fact I still have it 9 months on means it's there for life? my research suggest best results if treated in first 3 months no suggested out come if treated later. Also will the Gabapentin stop thing from brcoming worse or will it still progress?

Sorry for such a long post.

[Sissyt213]

Hi, I have MS, and I am experiencing the same thing! I was dx'd in 1997 with MS, and since then I have had several relapses which have varied from optic neuritis to paresthesia to muscle weakness, all in different areas of the body. In the past, it's always eventually resulted in a remission of which I'm grateful for. However, over the years my legs have developed some pins and needles and my toes started going numb. I was able to use various forms of exercise to manage my pain, and got quite involved in Mountain biking. Last year I was in a motorcycle accident, in which I injured my knee. Thankfully, I didn't break anything! I was however laid up for about three months. During this time, the pins and needles in my legs got worse and along with it the pain got worse! It's gotten to the point where I'm in soooooo much pain that I had to go on more and more pain medicine. I started out years ago, after an exacerbation which caused me to go on disability in 2004. I started out taking tramodol, and for many years it worked fine. After my motorcycle accident, and the pain got worse, I had to add percocet to the mixture. The pain eventually got to the point where I'm currently on the 25 mg Fentanyl patch, and I use two, alternating them to keep from coming down from one, before having the other on. My point is that my pins and needles have progressed to the point that it encompasses my entire body and now my fingers are going numb as well, and the numbness in my toes has progressed to involve my feet, legs, and pelvic, including the perineal area. It's not completely numb, so I suppose I should be calling it paresthesia instead. Your symptoms sound very much like mine, however, yours seems to have developed quite rapidly without going through any of the other symptoms of MS as I have. If you are interested in discovering what this is, and if as you suspect, it is MS, I would suggest finding a neurologist who is an MS specialist. I hope this helps you to find the answers you are looking for. Good luck and God bless!

[twist330]

Hi sorry but moving this up as I really need more views and opinions.

[twist330]

Yes with out contrast it showed slight wear to the left side considered normal with age.

[Karen99]

Have you had an MRI of your cervical spine?

[twist330]

No neither am I.

Thank you for the links there really helpful, Ren had also sent me an email with several links one being for the Mayoclinic which was also really useful. But as you say it doesn't quite add up.

Unfortnately the UK support website seems to have closed and I can't find any type of forum like this.

I actually put the same post on the neurology comunity and got a rather strange answer from a Dr Anurag Srivastava this is what it said:-

"Hi, Thank you for the question. I do sympathize with your health concern after surgical complication. It seems that you might have leg nerve injury during the surgery so that may have been resulted into RSD (reflex sympathetic dystrophy). Symptoms of RSD could be intense pain in leg, numbness, altered skin color, swelling and abnormal sensitivity. Treatment of RSD mainly includes steroid & pain killer. In addition, physiotherapy is the essential part of the treatment to improve the movement of the affected leg. I would suggest consulting a neurologist as well in order to reach at probable diagnosis here. Hope this information proves helpful to you."

I don't think that he had read the post at all. A little strange, this was not the expert forum I must stress.


I have started the Gabapentin I'm on day 4 it makes me sleepy and dizzy and so far no improvement to the symptoms (infact they even be slightly worse). but I've read the health page about neuro meds so I must just keep going.

Thanks again

[slightlybroken]

I looked up some info on RSD and I found some info you might be interested in.

It seems that there is 2 types of CRPS. Type 1 and type 2. From my reading, both types, include "Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain." This is how it is diagnosed as well. It all happens from an abnormal response from the sympathetic nervous system due to an injury suffered or a injury to a nerve.

If you've not experienced some of these key elements, I would be questioning it also.

I also read that some patients did have spontanous recovery, but not many. I took from what I read, for example you break your leg, instead of getting better, your sympathetic nervous system has an abnormal response. You develop RSD and instead of it just hurting where you broke the leg, it takes the entire leg, causing severe pain,swelling, color change, temp changes, etc..Over time most people would feel better when the leg has healed, but a person that has developed RSD would still have severe pain from the leg. The injury doesn't match up with the amount of pain felt by the patient...At least that's how I take it.

Your eye issue doesn't match, and frankly a lot of things don't match, but what do I know, I'm no doctor. LOL Here is a website were I got some of the info from:

http://www.rsds.org/2/what_is_rsd_crps/index.html

http://www.rsds.org/2/fact_fiction/index.html

I hope you do get some relief and this is the right DX, but I'm not really sure if it all adds up.

Take Care