Just recently I've been having a new (to me) symptom of a burning sensation or pins-and-needles sensation in the feet and ankles. I understand this is caused by sensory neuropathy, but I read elsewhere on this forum that for most patients, "...the sensory loss is minor and they are not bothered or not even aware of [it]."

Anyone else have any experience with sensory neuropathy to the point of discomfort, and also any experience with treatments or medications for relief? Thanks.

Hey Dan,

I have two sensory problems: cold feet (they always feel cold - I always wear socks around the house instead of being barefoot - including in bed. I also have a lack of feeling on the soles of my feet - they are always numb (not related to the cold feeling). This latter feeling is expanding and now parts of my upper foot are feeling numb.

Hello Dan!
A few weeks ago I got a burning feeling on the upper side of my left foot. It feels like somebody is pouring boiling water on my foot. It burns about 10 seconds, disappears, and then the feeling returns. It can be very painful. My left leg is besides the part of my body which is most affected by Kennedys. I´ve had the diagnosis for three years, symptoms for ten years (starting with tremor in the hands and muscleweakness) but this burning feeling started only a few weeks ago.

Dan, neuropathy is quite common even though for years it was not shown as a symptom. I have little or no feeling in both feet. They always feel cool or cold even though they can be warm to the touch. At times my left heal will burn with any pressure (for example in bed).

My neurologist explained it nicely with a drawing. Unfortunately, I didn't keep the drawing.

I apologize in advance if this is a dumb question, but....when you have limited or no sensation in the foot soles, does it affect your walking? Do you have to walk much more carefully to compensate for the lack of "feedback" from your feet?

Also, my doctor mentioned the possibility of taking neurontin (gabapentin) for pain relief. Have you tried that, or any other medications?

Dan, it is not a dumb question. It is a real one. With less feeling it is difficult to sense movement. The feedback just isn't there and that is one major reason why I practice shifting my weight from side to side to build up and maintain my ankle/foot muscles. It is very helpful since my reaction time is not good and occasionally non-existent.

Since I am not a regular user of any medication (other than dutasteride), I find that if I massage the area in pain it seems to relieve the problem. If it is a deep ache (not pain) in the muscles, one Ibuprofen works great for me.

Hi Dan,

My numb feet have no effect on my walking/running. Although this is a bit of a simplification, the muscles and sensory systems involved in walking are in the legs not the feet.

I do, however, have problems lifting my feet and I tend to trip on steps. Again, this is a leg sense and is not affected by numb feet. This problem has predated my numbness by a number of years.

I have no information on neurotin and I take no other medications.

Ed

Bobs symptoms started with hand tremors about 10 years before he was diagnosed. The Dr blew it off at that time.

His left foot dropped before his diagnosis. His feet are ALWAYS cold and freezing to the touch. I know he has numbness but since it isn't me, I can't describe it for you.

He does take Gabepentin. He started with the 300mg. I myself have a nerve disease so too was on the 300mg Gabepentin. My doctor increased mine to 600mg but it made me really, really sick with vertigo and headaches so Bob decided to try my 600mg (I think it was 600, could be 800mg?), anyway, he felt so much better at the higher dosing that his doctor now prescribes that does for him. If he is experiencing a lot of pain, muscle cramping, etc. He will ask me to get him a Gabepentin or a Tiazidine (muscle relaxer) and they seem to kick in pretty quickly.

I'll have to get him on this site so he can answer for himself!

I have neuropathy in my feet for years. Feels like I am walking w/ bags of rocks tied to my feet at times. I take Gabapentin 600mg three to four times a day for relief. That makes them almost numb and tolerable. Putting on my slippers is tricky as I have to watch where my foot is heading or I'll miss my shoe.

I get red itchy burning patches on my feet,legs,back an stomach. I darent scratch it as this makes it worse. My GP doesnt think it is KD related but Im not sure. I also have Dupuytrens Contracture in most of my fingers. Just wondering if these are connected to KD.Eric

Eric. I have not heard of those symptoms connected with KD. Does anyone else have either of these symptoms?

Hi Eric,

I have read everything I could find on SBMA symptoms, and I have seen neither red itchy patches (sounds like dermatitis), nor Dupuytren's contracture mentioned.

Dupuytren's contracture is known to run in families, so inheritance may play a role. My mother, who was of course an SBMA carrier, had it, but I have no way of knowing if that was related to her SBMA status or just a coincidence.

There is a new injectable treatment for Dupuytren's called Xiaflex (in the U.S.) or Xiapex (in Europe), and it is less invasive than the surgical treatments that were used previously.

Eric added the following information on this subject:

Tried to send the citation paper on this subject.
I Googled:
PMID 8048316 an up it popped. There is a copy of it on the KDA forum but Im not sure how I found it. Ill keep looking.
It was a suprise to see the citation.
Dupyutrens Contracture has been reported to be more prevelant in Scandinavian Countries. Also I read somewhere that theres a higher number of cases of KD in Norway per capita than any other Country. My Ancestors I believe were also from either Scandinavia/Northern Europe.
Coincidental and It intrigued me.
Eric

Hi Dan. reference neuropothy. I have had this sensation in my feet from the outset. 11 years ago. I have been in bare feet in the house for 10 years, without exageration. I cannot bear to wear socks or shoes. When I do go out I wear very light shoes, never socks. My feet and lower calf muscles are either feeling, numb, dead, or tingling or pins and needles at all times. I cannot properly feel my shoes when putting them on. My balance is effected as soon as I put shoes on. Unless I am in bare feet I do not feel in control of my situation. Often my lower legs and feet feel as though they are wrapped in an elasticated bandage, another feeling that suddenly I might feel a patch of cold water on my leg, I even look sometimes.LOL.
Sorry to go on but I thought I'd include everything.
Graham.

Graham, thanks very much for the information, and I am glad you included everything. The more the better!

My doctor prescribed 300 mg gabapentin taken daily at bedtime, and I think it does help reduce the burning/tingling sensation which was keeping me awake sometimes.