I've had cerebellar ataxia for 22 years; I was diagnosed with polyneuropathy 3 years ago. Do any of you have both conditions also? I'd love to hear from you.
What is polyneopathy? Sorry if spelling not good having very shaky day
I have spino cerebellar atrophy and was diagnosed few years back. I have had for approx 6mths, pins and needles in my feet and don't know what to do with myself. Been to gp (not my normal gp), she did not seem to know and sent me for blood tests. I normally only see a certain gp as she knows ALL about me! I did think this maybe to do with condition but as only happens now and then, I did not look further into, but may do so if happens again as was very uncomfortable. The gp thought of Restless Legs syndrome but said I was too young (I'm 40). I really think she sent me for tests coz didn't know!
What symptoms do you have Lori?
I found this website http://en.wikipedia.org/wiki/Polyneuropathy very hard reading!
I have Raynauds Syndrome .. numbness and burning but not pins and needles.
My sister in law has MS and she has pins and needles and my friend had Motor Neurons which was not diagnosed in time to save her. GP's should be more diligent in testing for this.
My husband has diabetes and has suffered some peripheral neuropathy but that went when they stopped his statins.
A muscle biopsy showed I had something wrong with my muscles but they dont know what!!
I usually give in to all the requests for me to be tested but have had enough now.. cant see the point.
Patsy
Hi Lori,
I have Cerebellar ataxia and radiculoneuropathy. I have pain around the hips and it worsens in the mornings. I am on homeopathic medication and it helps me very much. My walking, balance have been affected. I remain indoors but mobile. At present there is sensation in my feet and hands but suffer from muscle weakness in both my toes. Let us hope that the tomorrows’ will be promising for better health to all.
Me too.
Yes!!
I started taking Klonopin over the last year and it's been really helpful. I had complained for years to my doctors and got no answers till I started having "stocking and glove" distribution as well.
My primary care physician doesn't understand why Klonopin works (he didn't prescribe it). but there is medical research that explains it.
My most common symptom is having small (1"-3" sized) spots of hot electrical burning on or just underneath my skins surface. They can occur anywhere on my body and move from one place to the other with out reason or pattern lasting a few minutes in each spot. If I eat gluten it gets much worse. Stronger in intensity and duration.
I also have Reynaulds syndrome. I believe it's a separate thing though.
My understanding is polyneuropathy involves multiple nerve systems, and is different from peripheral neuropathy. My gp sent me to a neurologist (after multiple tests :S ) and the neurologist did the reflex tests and an electrical conduct test of some sort -- sorry, I'm not good at details. I have bouts of weakness, I have numb spots all over my body, I'm starting to have pins and needles sensation in addition to burning, and lately I have been very lightheaded and dizzy lately. My legs are very weak sometimes. I walk with a cane, but sometimes I don't feel safe even doing that, I'm not sure my legs will hold me up Eeeek! Anyway, I have this polyneuropathy as well as the ataxia, so I want to see a neurologist who knows both conditions well, if such a person exists.
And I know what you mean, Patsy, I too have had lots of tests and sometimes wonder "what's the point" if they can't do anything about it.
" Let us hope that the tomorrows' will be promising for better health to all." -- well said, Nan!
I'm wondering if I have the "pins and needles" that some of you have mentioned. When I hear that term, I think of the feeling when your foot goes to sleep or an all over sensation.
My symptom is more like one at time. I get the sensation in one foot and my whole leg jumps. It happens in booth feet, but just one at a time. It used to happen in my arms to but one of the pills has fixed that.
Does this sound like what y'all are talking about?
I am 52yo Native American lady. I was diagnosed with spinocebellar degenerative disease in Oct 2011. I started having balance problems in fall 2010 and Nov 13, 2010 I lost balance trying to jump up on my bed and broke both ankles and crused the right foot. So after 4 surgeries on that my condition got worse and am using a walker. I moved to Dallas in 2005 and live with my parents who are wonderful. And it turns out how much I need them. God had a hand it that!
I had to "retire" disability end of 2011. Can't drive so my parents and family and friends tote me around. I've always been very independent so this has caused a deep depression.
My feet and legs don't have outside feeling but burn inside, the pain is pretty bad.I was a secretary and could type lik 70wpm. Now my hands don't work so well so it is hunt and peck for me. On top of it I have an auto immune thing that hits and I can hardley get out of bed.
I've been to 3 Neurologists and it is test after test. I am through with all that! They can't tell me how this plays out.
I am now getting enroled in a pain management program that meets 3 days a week for 5 weeks. They have physical therpy, occupational, etc. an will show me ways to deal with the pain.
You are not alone..If you need a chat buddy let me know.
I have gluten ataxia and diabetes and I have neuropathy in my feet which can be very painful. I also took statins for many years but stopped a few years ago when I developed muscle problems. Statins are the source of many problems I think. Anyway, if I avoid gluten and sugars I can keep the neuropathy at bay but if I do eat something that triggers it I take Gabapentin (300mg) and Acetaminophen w/Codeine (1 tab) for relief. That will stop the pain until the triggers are out of my system. For instance, last night I ate some dried strawberries which had too much sugar - hence the reason I'm reading this blog at 5am instead of sleeping. I just took the meds and should be getting some relief from the pain in an hour or so. This combination always works for me but the best thing is to avoid the triggers in the first place and then I never have the pain. I recommend that you go gluten and sugar free and you may see a change for the better in a few weeks/months. I was diagnosed with gluten ataxia about 18 months ago and it took about 6 months for the diet to work but now I can walk without difficulty. I still can't walk the entire mall but I can shop at one end then drive my car to the other end and walk around there. Gluten and sugar free is the way to go!
I have stabbing pins and needles from my ribs to my toes. Yes eating sugary things makes it worse so does being still. It is part of what keeps me moving so maybe it has been both a blessing and a curse. ;)
Hi! This is Sharon. My ataxia came out when I got pregnant. When it first reared it's ugly head, I went to a support group. There was a woman there who said hers came out when she went through mentapause. Then, the doctor that was there said that many diseases can worsen or get better with major hormonal changes. It sucks!!!