curiousforever
12-10-2005, 07:40 PM
I know MS is one of the diseases that causes this....
I found out wednesday that my elbow cannot be fixed cause they are not impinged-they are demyelinated...and they don't know why.
And they hurt like the devil.....Lately all the nerves up and down my forearm have been hurting...and my sciatic nerve has been bothering me and I haven't had problems with that in a good 8 years or so.
Ugh. So what now? I don't get enough meds to deal with this pain....either of the topomax or the percocets...and I'm depressed cause it's suddenly gone from going to get my elbows fixed to they CAN'T be fixed.
For those of you that remember my dymptoms (if any of you do :) )
what demyelination disease fits better?
I go to a new neuro on jan 18th. the other one was a wack job.
I found out wednesday that my elbow cannot be fixed cause they are not impinged-they are demyelinated...and they don't know why.
And they hurt like the devil.....Lately all the nerves up and down my forearm have been hurting...and my sciatic nerve has been bothering me and I haven't had problems with that in a good 8 years or so.
Ugh. So what now? I don't get enough meds to deal with this pain....either of the topomax or the percocets...and I'm depressed cause it's suddenly gone from going to get my elbows fixed to they CAN'T be fixed.
For those of you that remember my dymptoms (if any of you do :) )
what demyelination disease fits better?
I go to a new neuro on jan 18th. the other one was a wack job.
Sponsor
duttin
12-10-2005, 10:30 PM
curious forever,
I can relate to where your at.
I have what they call chronic inflammatory demylinating polyradiculoneuropathy(CIDN).Its where the nerves lose their mylen coating.Basicaly MS outside the central nervous symptom is how my neuro explained to me.I have such extreme pain I've ask Doctors to remove my legs I have had this for 7 years and it can go into remission,hopefully with minimal damage.
I have been in physical therapy ,it has been very slow but the pain has subsided and I have regained some of my strength back.I do basic strengthening exercises on all limbs and light weight training.When I first started I couldn't lift more than a pound with my left arm,I'm up to 10 pounds it not alot of weight but I'm getting there.And it has been a very painful road.
I have been on several pain meds and meds for neuropathic pain and it didn't put a dent into yhe pain so I started fighting back through light exercises,I won't let it get the best of me.Resting does help a little.
Do a search on the web their is not a lot of info, it's a rare disease.
You are in my thoughts and prayers.
Toni
I can relate to where your at.
I have what they call chronic inflammatory demylinating polyradiculoneuropathy(CIDN).Its where the nerves lose their mylen coating.Basicaly MS outside the central nervous symptom is how my neuro explained to me.I have such extreme pain I've ask Doctors to remove my legs I have had this for 7 years and it can go into remission,hopefully with minimal damage.
I have been in physical therapy ,it has been very slow but the pain has subsided and I have regained some of my strength back.I do basic strengthening exercises on all limbs and light weight training.When I first started I couldn't lift more than a pound with my left arm,I'm up to 10 pounds it not alot of weight but I'm getting there.And it has been a very painful road.
I have been on several pain meds and meds for neuropathic pain and it didn't put a dent into yhe pain so I started fighting back through light exercises,I won't let it get the best of me.Resting does help a little.
Do a search on the web their is not a lot of info, it's a rare disease.
You are in my thoughts and prayers.
Toni
curiousforever
12-11-2005, 11:51 AM
would the lab work the rheumy does that rules out auto immune also rule out ms and parkinsons and stuff? Cause all of that came back negative for auto immune...
duttin
12-11-2005, 05:43 PM
curious forever,
They're several autoimmune diseases that can be ruled out through blood test.Have they done a lumbar puncture? with demyelination is shown through the spinal fluids,MS is seen through the obands and CIDP shows a high protein level in the spinal fluid.It's good that the reumy has ruled out other diseases.
Toni
They're several autoimmune diseases that can be ruled out through blood test.Have they done a lumbar puncture? with demyelination is shown through the spinal fluids,MS is seen through the obands and CIDP shows a high protein level in the spinal fluid.It's good that the reumy has ruled out other diseases.
Toni
curiousforever
12-11-2005, 09:19 PM
No lumbar puncture. Just mri of brain and cervical spine. Brain was clear-Cervical spine shows arthritis and junk.
meanwhile-nerves in arms-and now one going down leg get worse. the neuropathies are painful even...
they are talking about doing a nerve biopsy of my elbow...
meanwhile-nerves in arms-and now one going down leg get worse. the neuropathies are painful even...
they are talking about doing a nerve biopsy of my elbow...
6foot3
12-11-2005, 10:02 PM
curious forever,
They're several autoimmune diseases that can be ruled out through blood test.Have they done a lumbar puncture? with demyelination is shown through the spinal fluids,MS is seen through the obands and CIDP shows a high protein level in the spinal fluid.It's good that the reumy has ruled out other diseases.
Toni
nuffs3 is correct about the Spinal Tap. There's lots of info in the fluid that they can check for. harry!
They're several autoimmune diseases that can be ruled out through blood test.Have they done a lumbar puncture? with demyelination is shown through the spinal fluids,MS is seen through the obands and CIDP shows a high protein level in the spinal fluid.It's good that the reumy has ruled out other diseases.
Toni
nuffs3 is correct about the Spinal Tap. There's lots of info in the fluid that they can check for. harry!
curiousforever
12-11-2005, 11:52 PM
I'm going to ask my primary doc to get busy with getting me one of those. I'm not waiting for the neuro appt if I don't *have* to....
Now another question (I have a million...see curious fits me doesn't it..) What if heat doesn't bother me? COLD is worse on me than heat is...I have (right now) the heat on 77, sweats, socks, a jacket on inside my house and I'm freezing....I miss the summer when it was 120.
Now another question (I have a million...see curious fits me doesn't it..) What if heat doesn't bother me? COLD is worse on me than heat is...I have (right now) the heat on 77, sweats, socks, a jacket on inside my house and I'm freezing....I miss the summer when it was 120.
6foot3
12-12-2005, 02:10 PM
I'm going to ask my primary doc to get busy with getting me one of those. I'm not waiting for the neuro appt if I don't *have* to....
Now another question (I have a million...see curious fits me doesn't it..) What if heat doesn't bother me? COLD is worse on me than heat is...I have (right now) the heat on 77, sweats, socks, a jacket on inside my house and I'm freezing....I miss the summer when it was 120.
Possible hypothyroidism ! harry!
Now another question (I have a million...see curious fits me doesn't it..) What if heat doesn't bother me? COLD is worse on me than heat is...I have (right now) the heat on 77, sweats, socks, a jacket on inside my house and I'm freezing....I miss the summer when it was 120.
Possible hypothyroidism ! harry!
curiousforever
12-12-2005, 03:28 PM
I know between the primary doc and the rheumy they took 15 vials of blood-but I'll be sure to ask my doc at my weekly appt (we update weekly at this point cause I get pain meds refill for the nerve pain and cause it seems there are new symptoms weekly...)
LJoy
12-15-2005, 04:20 PM
I have carpal tunnel and ulnar impingment both hands how do the Dr.'s know weather it is ulnar impingment or demyelinated? I am maybe MS.
curiousforever
12-15-2005, 04:29 PM
They know from the EMG that it is demylinated instead of impinged....