Neuropathy not Dystonia
Hi everyone,
My testing at UAB has been completed - tons of labwork, thorough exam and an NCT/EMG. It's been determined that my problem is not Dystonia, but Peripheral Neuropathy instead. The specialist explained that when nerves die, surrounding healthy nerves send out extra branches of nerves to try to make up for the dead one(s). But the muscles are very irritated by this, and will spasm with just the slightest movement. If the spasm is bad enough, the area will twist - in my case, my feet and toes. Neuropathy can be caused by many different things - we don't know the cause in my case. The treatment is to try to calm the muscles - she has me on Klonopin. She also found that my carnitine level is low, very important to the mitochondria in muscle cells...I am on a prescription for that too since I cannot boost my carnitine level in my diet.
I am welcome any comments or input.
I am thinking about leaving this wonderful group since I don't really fit here now. But I have learned so much and have made some good friends, all of which I am very grateful for. This is the best support group ever.
~Connie~
My testing at UAB has been completed - tons of labwork, thorough exam and an NCT/EMG. It's been determined that my problem is not Dystonia, but Peripheral Neuropathy instead. The specialist explained that when nerves die, surrounding healthy nerves send out extra branches of nerves to try to make up for the dead one(s). But the muscles are very irritated by this, and will spasm with just the slightest movement. If the spasm is bad enough, the area will twist - in my case, my feet and toes. Neuropathy can be caused by many different things - we don't know the cause in my case. The treatment is to try to calm the muscles - she has me on Klonopin. She also found that my carnitine level is low, very important to the mitochondria in muscle cells...I am on a prescription for that too since I cannot boost my carnitine level in my diet.
I am welcome any comments or input.
I am thinking about leaving this wonderful group since I don't really fit here now. But I have learned so much and have made some good friends, all of which I am very grateful for. This is the best support group ever.
~Connie~
Replies to This Discussion
-
Permalink Reply by Ellen S on -
Connie, I hope you will stay and inform us about your peripheral neuropathy experience. You may be the answer to someone else's prayer - someone who, like you is still searching for answers and coming up empty. Differentials are just as important as the disorder itself, especially when you're talking about something like Dystonia that is so often misdiagnosed.
Please stay... <3 <3 <3 I'm one of those still looking for answers, and I also have peripheral neuropathy complicating my case. Nobody ever told me it could cause these symptoms...
-
Permalink Reply by sisdailey on -
Hello Connie:
I am sorry to hear about your diagnoses. I do hope you will decide to stay with our group. You have contributed so much and I am sure you can in the future. You've been a great friend. We need you here. I do know a little about peripheral neurophathy as my step sister has it. She has been living with it for many years.
God bless you whatevr you decide, Your friend Sisdailey
-
Permalink Reply by Deanna on -
Connie,
The doctors at Mayo named that for me, but when I went to another doctor/hospital they named it Dystonia. I have been on lyrica and it helped for about a year with the nerve pain. I am still on it but now Artane. Honestly, I see no difference between the two. How did your doctor distinquish the two?
Deanna
-
Permalink Reply by Imove on -
Hi Deanna,
To be honest, I don't see the difference between the two either. The dr did comment that it has been a very slow onset, and it has - first symptoms about 17 years ago. But from I understand from some Dystonians, Dystonia can be very slowly progressive. I am taking Klonipin at night only and it is helping some. I am still having some spasms & twisting during the day, but so far not too badly. I am also still waking at night with spasms, but not as often and the sleep is deeper, thank God. I see her again in August, and I intend to ask her how she specifically decided this isn't Dystonia.
~Connie~
-
Permalink Reply by Deanna on
-
I apologizes Connie, just now ran across your message. I sleep ok once I get to sleep. My husband says it sounds like a bear chasing him in the bed at night with my snoring....I was never a snorer before...ok, it was few and far between.
What were your symptoms that far back....17 yrs? For me its like its getting much worse faster. About 3 years ago I had a strange feeling, like my body was cut in half and my right side began aching. I was told it was athritis in my hips...but as time progressed it seems to be gathering alot more steam now. I hate it! Hope you are well.
Deanna
-
Permalink Reply by Imove on
-
It's good to hear from you - I'm glad you wrote.
When the symptoms first started, it was spasms in my toes and feet only, plus they weren't as severe as they are now, there was no twisting, and not as frequent either...like every 3 months or so. Over the years, it's progressed to several areas of my body, the intensity is unbearable, I have twisting, and the frequency is usually daily of at least one area and usually several.
I really don't know how to proceed from here - I see the specialist in August. At my Iast visit, I asked her if my problem was peripheral neuropathy in my ankles & feet, how did that explain the spasms everywhere else, she seemed almost just a little flustered, almost as if she'd forgotten about that aspect of my symptoms. She responded by saying well, they obviously couldn't do a nerve conduction study everywhere, but that if the Klonopin worked for my feet then it should work for the other areas too. And that was all there was to her response! So she's obviously not real interested in pursuing the cause of all the symptoms since my NCT/EMG showed neuropathy in my ankles. I think she feels that since she found the nerve problem and a potential fix (Klonopin) then why pursue the rest. My local neurologist is not very supportive or knowledgeable about any of this, and i'm planning to change as soon as I can find a good one - maybe he/she will be interested in finding answers from a different specialist than the current.
Sorry to have chattered on - didn't mean to! Guess I just needed to get this off my chest.
~Connie~
-
Permalink Reply by tortimomma on -
Hi Connie, I'm new to this site as of this week. So much info & so many people that suffer as I. After being diagnosed with cervical dystonia/spasmodic torticollis [going un-diagnosed for four years] I have also been diagnosed with peripheral neuropathy; my doc seems to think there is a connection between the two. Other ails are my lot as well as with many I'm sure. Seems this disease doesn't stop with just one problem, it likes to afflict many areas...maybe that's why it's so difficult to diagnose. For what it's worth I would like to hear how you progress with the treatment since I took Klonopin off & on for years without much improvement. What I got was benzo addiction & was very hard to taper then stop. I wish you well.
tortimomma [Karen]
-
Permalink Reply by Imove on
-
Hi Karen, and welcome to this group. It is wonderfully supportive here and the available information is fantastic. I am concerned about the benzo addiction possibility too. I've only been on Klonopin for a week and a half and thought at first it was really helping. But last night there was a lot of spasms with twisting, waking me over and over all night just like before, and today too while just sitting at work. I am taking a very low dose (0.5mg at night). I now realize that this drug is obviously not helping like I thought. I think the slowing up of the spasms when I first started taking it last week was nothing more than the normal ebb & flow of these symptoms like it's always been. I have some doubt as to whether this really is peripheral neuropathy only.
I am happy to stay in touch, as much or as little as you want...I've made some friends here and it's great.
~Connie~
© 2009 Created by Marie
