Hello All.

First I'd like to commend all of you for your strength, humor and positive attitudes with all that you're dealing with.

This is my first post in the neuropathy forum. I am undergoing testing for autoimmune issues and will see a neurologist in late August.

I am experiencing pins/needles, numbness, muscle jumps, burning sensations and general pain in my hands, forearms, feet, ankles, knees and calves, which I've read many of you are also feeling.

But I have numbness, pins/needles in my face and lips.

Does anyone else experience this?


thanks!!
babs

Hi Babs! I do not ave the issues that you have....I do not have PN. I was just floating around the forums and saw your post. With it being the long weekend and all lots of people are awa so han in there..you will get replies! Hope your day is going well...today we are going for a nice long drive and I will be lovin' it!!

Well hi there:


I bet somebody is going to jump on board and tell you they have exactly the same symptoms.

I'm a diabetic, but my husband has autoimmune stuff going on and is presently on IVIG.

How long have you had your symptoms?

Melody

I have had the tingling and pins and needles since before the 1st of this year and joint aches for much longer than that. But then a burning on the bottom of my feet sent me to my PCP.

the pins and needles in my face and lips has been recent.. about two months.

I'm anxious to see the neurologist and have the EMG etc. performed so perhaps we can find a dx.. and then some rx??

First of all, welcome! Second, I don't want to discourage you but you need to be aware that "perhaps" and other words such as "maybe" is usually the operative words when trying to DX something like this. *If* you're lucky they'll find it immediately and know what it is and what's causing it. For most of us with Neuropathy(s) it's seldom that simple.

You'll find that many people on this board know more about their conditions than most doctors, including neurologists. The thing to remember is to keep pushing for a correct DX. And find a doctor or clinic that specializes in your precise condition. And I'm sure others will jump in here and give you many important tips and advice to help you become your own best health advocate.

There are a number of medication type treatments out there. All carry side effects of varying kinds and degrees and of course since we're all different we all react differently to these drugs. And in a case of Vit B-12 deficiency (this can cause PN symtoms all on its own), Neurontin (generic is gabapentin), can worsen the problem because it depletes B-12. That's partly what happened to me. Finding this board was the turning point for me.

My problems are strictly in my feet. Lucky me. It could be so very much worse than what I have. And my symptoms seem be getting better thanks to advice and support I've received on this board. The people here are fantastic, supportive and very knowledgeable. I found this board in the middle of the night several months ago when my pain, tingling, stabbing sensations along with RLS symptoms were at their worst. I was awake and miserable, crying, upset and terribly depressed over the situation. This place has been a life-saver for me. Truly.

Hang in there and keep us updated on what's going on, what the doctors are saying, etc.

Barbara

thanks Barbara!

Oh I can see I have a long road to travel But I'm a persistent bugger!!

I've been tested for the B-12 and other deficiencies.. All levels were fine.

had some tests for autoimmune diseases ...some came back positive and one is being redone due to a HIGH positive and then a negative That's just crazy making!! I've had the basic testing for TSH, diabetes, MS, Lyme, among others. I'm feeling like the pin cushion!! all were negative or nonremarkable (isn't it funny when some test are normal they say this? Odd, IMO ... I'd like to think that a negative is quite remarkable!! )

I've just not read about anyone with the pins/needles numbing feeling in the lower part of their face... I'm curious if anyone else has that?

Thanks!! I appreciate your posts.

.....I experience your same symptoms body wide. Mine came on about April , shortly after my diagnoses of type 2 diabetes. I was pre-diabetic the prior year (2005). My dx is small fiber sensory neuropathy according to my neuro. Have you had a glucose tolerance test? I would be curious about the results ,since fasting glucose does not give you a complete picture. Also you might want to take a second look at your b-12 level. What is referred to as normal, certainly did not work in my case. I took the advice of Rose on this board and started Methyl B ,it improved my fatigue within two weeks ( I mention this because your mood states tired. The docs seem to think my neuropathy is due to the high Glucose. I am not convinced ,so I am still checking it out. Stay tuned--you will get some good info.

Since no one has yet mentioned it...blood levels of B-12 by themselves are not accurate. One of the long time memebers here, Rose, has a wonderful site that will give you good basic information.

http://roseannster.googlepages.com/home

I also have numbness in my face, lip ect. @ years with the same symptomes you have mentioned. for meanwhile - all the test are OK and my neurologist said it is - probably - idiopatic small fibers sensory neuropathy.
The skin biopsy is recomended in such a case, but I didn't do it yet.
Good luck with the tests. (ask them to check sjorgen - too, just in case, also very common with NP)
all the best

Had an appointment w/ the rheumie today.. this was my first with him.. I went for a second opinion after the first guy spent 10 minutes ordered tests and dismissed me as having a virus.

This guy seems great... we spent an hour going over everything... He actually LOOKED at my joints and tested my reflexes and found the reflex for the right knee that my other doc counldn't locate!! Very very happy about that!!

He ordered a ton more blood work.. (sjogrens is among it) and (thanks Mel )he said that depending on these results, a LP is in the plan or a nerve biopsy. My mother had Reynaud's syndrome so that's being checked. ...as is scleraderma and CREST syndrome.. I have a dear friend w/ scleraderma and it is a sad horrible thing..

I know so much about those diseases from reading and reading and reading trying to find wht's wrong... that when he asks a question about losing hair and ulcers... I know what he's looking for.

I felt like someone listened.. I felt as if he would try forever til he found the issue causing this..

I haven't taken any vitamins in over a week... so the blood work should show all that is wrong