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.

Ok i just wanted to freak Mel out. Because you will see i'm bad i live
in Mo. and it's hot ,i was terriified because my son lives in MN. And i'm nuts.
Really i had just about everthing your talking about,but i have polyneuro
apathys. Which means more than one reason.,as you may have.
I have a feeling you might have thyroid promblem. But if Rose is around
or Shelley is around they will jump in. Wel welcome to our world but don't
worry go from day o day and good Luck,keep coming back. it
will scare the tar out of you st first. . Sue

Sue, you crack me up!!!

mel

--is what is called "stocking glove"--symptoms appear first in the parts of the body farthest from the center, due to the fact that in chronic, slowly progressive neuropathies, nerves tend to "die back" from the parts hardest to get nutrients/oxygen to and toxins out of--it's hardly the only presentation. Many people, especially those with with acute or sub-acute onset, report symptoms in various other parts of the body. I am one of those--my acute onset burning small-fiber sensory neuropathy did start in my right foot, but spread to almost every corner of my body within ten days. Though it took me months to get to specialists at Cornell-Weill Center who actually 1) did not discount my symptoms, and 2) could test for damage to small fibers by skin biopsy, which confirmed widespread damage to those fibers which subsume the sensations of pain and temperature, I was fortunate that the Neurontin I was put on did start to work quickly enough that I was functional within several weeks. Then, I was able to do enough research to realize that though all my tests had been negative/normal to that point, they had not been anywhere near extensive enough, and that's why I eventually went to Cornell-Weill. (Small fiber dysfunction cannot be detected through standard nerve conduction studies or EMG, as these are only gross enough to measure wide-scale dysfunction of larger, myelinated nerves.) Before those weeks, though--imagine a sunburn all over your body that's been rubbed with steel wool. And that included the face and scalp.

I would strongly suggest you look at the www.lizajane.org spreadsheets--a number of us worked with Liza Jane in helping to put together this long but extremely useful way to monitor just about every test for neural dysfunction we could think of/find out about--to see just how thorough your testing has been; if you're like most, I bet you've just been through the tip of the iceberg.

Also, in the Useful Websites section, there are numerous good articles about neuropathy types and testing. The Triehaft article gives a very good overview of small-fiber neuropathy in particular:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

And, since you mention face/lips--one fo the most common culprits for those type of symptoms is neuropathy due to celiac/gluten sensitivity or vitamin deficiencies from that--make sure you get tested for those levels.