[daylilyfan]

I have Reflex Sympathetic Dystrophy, and recently diagnosed with Neuropathy, and Central Pain Syndrome. I am unemployed, still have Cobra insurance, but it won't cover tests until I pay out of pocket $5000 with I do not have. I have filed for disability. I did have extensive bloodwork last month and did not have any low vitamin except D. No high sugar level etc. We think the neuropathy could be from the RSD, or the Central Pain, or from antibiotics back in April. At this point, both Neuro and Pain Doc say let move forward.

Many of the meds you all take have already been tried with me for the RSD - neurontin, lyrica, cymbalta, Klonapin - can't take them. Recently tried Savella. Could not urinate. Pain doc put me on Methadone. Spent 2 months going up in dose, but only took care of 10-15% of pain. Not worth it. Going back on Topamax now - up to 200mg so far. Has not helped so far.

Neuropathy symptoms - tingling in hands that goes almost to elbows, in feet halfway to calves - happened at same time, and within a week. It comes and goes a bit, but probably there 85% of the day. It is a possibility this could be something spinal with me, but it is an off chance... and I cannot afford an MRI at this point. A couple months ago started getting buzzing sensations in feet and hands, electric shooting pains from hands to wrists to arms - with the RSD I get horrible electric pains in upper body, but never had them in hands before. I am much worse at night. With the RSD, I usually only sleep 2-3 hours, but now, I cannot get comfortable at all laying down, the pain is unreal in my hands and tingling in my hands and feet. Feet don't hurt any more than normal (have RSD in both feet) but hands hurt a LOT. I only have slight RSD in right hand, but do have RSD in left hand. But this pain is different than the RSD pain.... and mostly at night. It is worse with low barometric pressure.

No amount of rubbing, ketamine cream, voltarin gel, heating pad, epsom salt soak, elevation nothing has helped it. Sometimes the hand exercises I learned at Occupational therapy eases it a little.

My question for you all is - I am loosing the strength, flexibility and mobility in my hands. When I tried to type out the answers to questions to the social security forms I ended up getting dictation software - which I am using now. I can not open a small bottle of soda, a bottle of water. I sent for little tools to use to help me do it. My hands are not numb - well sometimes the tips of my fingers and toes are numb, but most of the time they feel like they are asleep, or in vats of 7-up -very very tingly - but I cannot grip anything. Especially when I get up in the morning, I cannot close my fingers to touch the palm of my hand. My hands are so stiff. I heat up a microwave heat pad, heat them up and start working with them. An hour later, I can move them about half normally. 4 hours later, they are close to normal, but still about half what was my "normal" strength, which is a lot less than the average person.

I use a service dog for mobility. She wears a harness that has a fat, padded handle. For a year, I used her on my weak side, which is my left side, so that left my better arm for reaching for things, opening doors etc. Now, my hands are so weak I cannot keep hold of her, and I have to keep switching her from my left to my right side every 3-4 minutes. Thank Heaven she was trained to work from both sides. The other day when we were out, and I kept switching her, she looked up at me like, Hey, this is getting old, I am getting dizzy down here! She will adjust, but I wondered if this is something that is normal with Neuropathy or if it may be a sign that it really is something spinal going on. I go back to the Neuro and the Pain Doc in mid Sept.

The neck problem I have is cervical spondylolisthesis between C3-C4 and C4-C5.

I am also having a lot of problem coordinting my fingers typing. I am having problems holding a pen to write ledgibly for more than a few sentances (and it is also painful). Driving a car it is hard to hold the steering wheel. I bought a steering wheel cover that is anti-vibration and big and padded and it helped, but it is bad if I have to drive more than 15 minutes. My pain doc is at Cleveland Clinic, and it is a 3 hour drive. I hope I can get someone to go with me! Yikes.

Does this loosing strength and mobility seem normal for neuropathy? Do any of you have this? Should I be seeking other answers? Should I go for an MRI even though I have no way to pay? I already owe $900 for all the blood work and will have to work out a payment plan for that - with zero income that is not easy. Living off savings now.

Thanks!!!

Juli

[glenntaj]

--COULD stem from neuropathy, but I'm intrested in how your other diagnoses were arrived at. It's very hard to be diagnosed with Central Pain without an MRI of brain and upper spinal cord to confirm lesioning of the spinothalamic tracts:

www.centralpain.org


And, are you getting the trophic changes associated with RSD/Complex Regional Pain Syndrome--temperature disruption in the affected limb areas, color changes, sweating disruption?

http://neuromuscular.wustl.edu/senso...tml#idiopathic

Moreover, all the symptoms you listed could be explained by not only a systemic neuropathy, such as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP--sort of the longer, more chronic form of Guillain Barre sydrome), but also by central nervous system demyelinating disease, such as Multiple Sclerosis of Acute Demyelinating Encephalomyelitis, OR even by the compression issues in your cervical spine. The problem with neural symptoms is that many different etiologies can result in exactly the same symptoms and the process of elimination to come to a diagnosis is often very long and expensive. I may be inacurate, but something in your description hints at doctors throwing terms around to explain things they're unsure of without a lot of systemic testing and thinking.

Definitely think you should get that MRI--would the facilities make a discount or pay-a-little-at-a-time deal? You should be checked for demyelination in the central nervous system and for compressive effects in the cervical spine.

[cyclelops]

A lot of your symptoms ring a bell with me and I have autoimmune issues....I can't hold a pen to write for more than a few sentences either....nor open bottles....I am having surgery to 'fix' the arthritis in my thumb, which has pushed my thumb over and caused severe weakness. I am very nervous about this, hearing about issues like you have. Anyway, I DO have severe hand issues, have PN and also an autoimmune disease too.

[shiney sue]

I have CIDG please e-mail your Neou and ask what they might think...like c. i
can barey use my hands,not even to sot papers. Amd they hurt OH 6hey
do hurt, tingle burn. Ouch,ouch.
I had pretty good resulths with ivig then got a infeection in my port rhen we found out the ivig was doing my kidneys in,well ended up in the hospital for 2 months.. I am faling about me because so many people do so well on ivig.
Buttt having your kidneys shut down,and they had to put me om dia. for a few days was so scary.

I have tried eveything you have,no luck,am on a little bit of morphine but doesn't helped much Please offer small amounts on payment plans most will
take jusr pay it. sorry can't help you more but glad to see more people speaking about there hands. Bless you Sue

[daylilyfan]

Glenn - The RSD is for sure - have had it almost 10 years. It has gone from one area to another as I have been injured through the years. Have temperature changes, red, shiny skin, sweating, hair growth changes, swelling for years, many many symptoms, including bone changes. Been diagnosed by Michael Stanton Hicks - one of the world experts and my Pain Mgmt doc is one of his colleagues at Cleveland Clinic. RSD is one of the things that can cause Central Pain according to my PM.

They are diagnosing the Central Pain on symptoms right now - not much treatment for it, so they don't see getting tests done I can't afford because it won't help treat it. Interesting side note... the PM and the Neuro do not know that the other one and do not know each other has said that I might have Central Pain. Because of the PM's high level of expertise I am more likely to go with her than the Neuro, who is known to be good in his local area, but she is very well known. I really trust her and have been treated by her for many years. The neuro has only seen me since April. My GP thought it would be good to get a fresh look and see a different neuro than I have seen in the past.

That is what my PM thinks about the possibility this is some sort of problem in the neck to - that my RSD is so reactive to any injury that a surgery right now is not what I want unless it is something life threatening.... so even if it is a neck issue, that those are often not successful surgeries, so she does not think it is worth checking that out right now until I can get disability and the insurance from that or my situation changes.

cyclops - I don't think mine is arthritis as it pretty much happened within a few days, after being on an antibiotic back in April.

Sue, what does CIDG stand for? I'll google those letters, maybe it will come up.

The autoimmune angle is an interesting one. They really don't know yet what causes RSD. Some think it may be reaction to parvovirus. Who knows. I have an upcoming appt. with my GP, PM and Neuro in early Sept. I'll look up what everyone has mentioned, and then see what they think.

It is so frustrating to not have my hands. While I have been loosing "body parts" to RSD the last 10 years, and my left hand has hurt, I have had use of them. Now, this is frustrating. And, scary.

Thanks for your replies. It sounds like this is NOT a normal part of PN.

[nide44]

Originally Posted by daylilyfan

............., what does CIDG stand for? I'll google those letters, maybe it will come up.

Try CIDP
Chronic Inflammatory Demyleinating Polyneuropathy

[daylilyfan]

thank you nide44!!

I will look it up!

[cyclelops]

No you don't have the arthrits...(I do), but I have heard of developing RSD after the surgery....I am d@mned if I do, and d@amned if I don't do it....so here goes....I will be absent from here most of the Fall....awww, I am sure I will be missed.

For you, I guess if I were in your position, I would try whatever I could, and it seems you have good physicians.

I know I have some central pain stuff going on, since I was in a high speed head on many years ago....tinkered a bit with my head and spine, don'tcha know...never been right since and been in pain since. I took a hard hit to the head and my sternum was fractured....a good recipe for autonomic neuropathy right there.

I have decided to fix the little stuff, like the arthritis (and this surgery isn't little, it's fairly massive really, for a thumb.) I figured I can't do anything for the BIG stuff, other than some pain pump, which will probably do me in given my autonomic issues....so I may as well try to fix some of the little stuff.

I have vascular issues with my autoimmune disease, probably raynauds, so, I do have a bit of understanding of what you are going thru. I feel badly for you and hope you can get help, but there is always the danger of iatrogenic disease, and that is what scares me.