Question about pins and needles
 

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?

:confused:
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:
:welcome_sign:

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?? :Dunno:

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. :hug:

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 :confused: 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 can relate....
 

.....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.

I have the same exact systems you have!!!
 

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. :eek: it
will scare the tar out of you st first. . Sue

Sue, you crack me up!!!

mel

While the most typical "pattern" of neuropathy presentation--
 

--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.

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

why do you say thyroid? I'm curious because that is what *I* think!! Other tests are coming up negative..

Reading quickly over Rose's site..

Ihave a question:

I take a B12 supplement... and my B12 was fine in blood tests..

so, I should ask for this additional test? Please advise soon,I am seeing PCP on Tuesday.. Thanks!!!

Hi
 

And if i didn't say wecome i sorry, today is goffey Sunday and the one's
you need the most will be back tomomorow. Please if it at all posi. be
here as well it's something you said about your mouth. But Sue has
had to rest all day and must be back at Dr. who will yell tommomrow. When
she stops yelling let me see what i can find out. Don't worry you Dr. will
first day senting up tests. See you on Monday Sue

Hi.

The b-12 supplement you are taking, (believe me on this), is not Methyl B-12 which is what we all take. We take megadoses (and in my case, it worked terrifically).

Now the numbers (that the experts say is normal), IS NOT NORMAL FOR PEOPLE WITH PN.

People with PN should have their numbers in the 4 digit range. Believe it or not, this is true.

I go to iherb.com and I buy the 5000 mcg of the Methylcobalimin.

The regular b-12 in the bottles is cyanocobalimin (which your body takes in, then converts it to methyl (which is what we need), only we don't get enough.

So what exactly is your b-12 level?

Melody

it's 566, Mel.. and my folate was 16.3

Thanks..

So... this is way low for a PN sufferer?:eek:

also.. which form is best.. sublingual.. lozengers?

I hope Rose chimes in, but her site is informative enough.
If you take B-12 as a part of a B complex or multi-vit- it is CYANOcobalamin.
METHYLcobalamin is the oral sub-lingual type.
If you are taking a B-12 supplement alone, your B-12 test results will be skewed. Read Rose's suggestions on what to do prior to blood work tests.
My levels were (at first) in the 450 range and deemed 'normal' by my idiot PCP at the time.
After taking methyl- the labs flagged me, and my present PCP had to make notation that I take supplement for B12.
My range now is in the 1200-1400 levels.
Be wary of any doc that says 'normal' (even 'abnormal') - get the results and know your numbers. Then compare them and use the Liza Jane charts
to track differences over time, and succeeding testing.
Bob B

Wow.

I am appreciative of all this info..

but.. why don't PCP's know this stuff?????? :rolleyes:

Off to check out the charts.. and read completely Rose's site..

Ummm...both my sublingual and complex are Cyanocobalamin. What does this mean? That I should take more? Or try to find the other, Methylcobalamin? And where would I find that? I've not seen it on the shelf at any of the stores I've checked out for vitamins.

Finding methylcobalamin
 

Dear jarett:

I too could not locate methylcobalamin in any stores around here. I didn't check with health food stores and suspect they carry this form. However, there are many sites on the Internet where you can order this. Just type in methylcobalamin and many will come up.

Shirley H.

I found it here where Mel gets hers.......

http://www.iherb.com/Search.aspx?c=1&kw=Methylcobalamin

I'm just waiting to hear which type I should order..

Jarett:

I went to 10 stores to find the methyl b-12. I went to my local GNC and they only sell the cyano. I then went on iherb.com and initially bought the 1000 mcg of the methyl b-12. After one week, I knew I wanted the bigger dosage. So this is what I bought.

Here's the link:

http://www.iherb.com/ProductDetails....1&pid=117&at=0

I sometimes take two a day. That brings me to 10,000 of the Methyl b-12. I read Rose's information and it literally brought me from burning, Pins and Needles, tingling, 24 hours a day (after my podiatrist used a vibrating tool on my toes and I went absolutel nuts), I went from that, to occasional burning.
But I'm a diabetic, and have been for 20 years. I keep my sugar stable, I don't eat what I'm not supposed to and I do whatever I can to hopefully keep my PN at bay. Not all of us can do this, but I most certainly do the best that I can.

And from reading all the information on these boards about the difference between cyano and Methyl, I know that the Methyl is what my body needs to repair my nerves. It will take some time, but it has absolutely no side effects. You can't take too much. It doesn't stay in the body and your body will take in as much as it needs. Actually it can't get enough and we need megadoses of Methyl b-12.

And forget about our physicians explaining the whole Methyl B-12 to us. They never learned about this in Medical School. Physicans (god bless them, we do need them), well they learn how to fix, not actually how to heal. That's a whole other planet to them. As an example, last month, Alan was sitting in his podiatrist office, and the head podiatrist was treating Alan. I mentioned Methyl B-12 and the doctor said "you do not need to take this unless you have Pernicious Anemia". I said "but what about what I have read about how it heals nerves (even though it takes a long time). The doctor replied "that is absolutely ridiculous, I never heard of this in medical school and I'm practicing medicine for over 30 years".

See??? they are not taught this in medical school so how can they tell us about it???? So we learn things on our own. They might not believe that we can repair our nerves, but I most certainly believe that we can. And I most sincerely believe that PN'rs know significantly more about neuropathy than most physicians.

I take this on an empty stomach first thing in the morning because B-12 is a large molecule and if there is food in your stomach when you take it, the food will aborb it and not your body, so take this on an empty stomach.

I use the losenges that I dissolve under my tongue. I don't chew it (then it would go in my stomach). This way, it dissolves under my tongue and my body absorbes as much as it can. I could probably take 30,000 a day but my bank account won't let me.

We have to learn how to monitor our own bodies, our stress levels and how to help ourselves deal with pain, and frustration.

It's baby steps but I'm on the road.

So Babs, get the Methyl b-12 and start taking it. You have nothing to lose.

Get those b-12 levels up to 4 digits.

Melody

Babs 3169 raises a good question....
 

......."why dont docs today know this stuff". In my very humble opinon healthcare today is a assembly line approach. Practically all ailments have a one size fits all solution....ex:...statins are prescribed like they are jelly beans, the results..just google lipitor and start reading...many hypertension meds cause depression...go to the doc and what do you get?..an anti-depressant...most docs can hardly keep up with the latest and greatest miracle drug ,let alone devote time to the vitamin and mineral needs of a patient, ( and some wouldnt know where to start). I dont blame the physician entirely , in many instances the safest route is taken to avoid the lawyers who want to sue the poor schmuck out of business. B-12 ? the doc looks at the labs sees a 550 and says "you're ok", well there are a lot of studies ( scientific) that say you're not ok at that level. Many of these meds deplete critical vitamins and minerals and docs spend precious little time studying this end of the eqaution.Tank god for the internet!!! (or was it Al Gore)?

and by the way...
 

...my b-12 was 550 and folates were 20 and I felt like s***! I am a pretty good sized ,outdoor type active guy, but shortly after this neuropathy took over I became a lump never moving from the easy chair. I am convinced that that b-12 level was way to low! I am now mowing my yard ( 2 acres) , tending our rose garden, feeding the dog and cat, and taking my lovely wife out to dinner and antique stores. Now that is a testimonial !....ps...ditto what Melodie said.

Babs:

Forgot to mention one thing that Rose had indicated on these boards. Do not take the b-12 a few days before you are taking any blood tests.

You want a clear reading of what your b-12 is on the day of your blood test.

For example, if I am getting a blood test (which will include a b-12 level), let's say, next week, I won't take any b-12 for 4 days before that blood test (am I right, Rose, anybody??).

If you take the b-12 right up until the test, the test won't give the whole story. That's what I learned from reading about b-12 on this forum.

Melody

oh.. that sounds like me!!

and I guess the doctors couldn't find anything else wrong with you?

I'm waiting on a second ANA.. the first was HIGH positive.. a second done at another lab was negative.. Heaven knows which one is wrong!!! Anyway I'm havnig a third done tomorrow.. That's the only thing that was positive in all the tests for all kinds of things ... from Lupus to MS...

OK Mel.. thanks!!

I haven't taken a single vitamin for over a week.. My husband wanted me to stop all for awhile to see how I feel.. but neither better nor worse is how I'm doing.

You're all so very kind and helpful... :grouphug:

Babs:

One quick question. You mention all the blood tests you have had. Have they ever suggested a lumbar puncture?

My husband was diagnosed with Idiopathic PN for 18 years. Only last year, when his neurologist said "oh, you never went for a spinal tap, let's get you one". (It didn't hurt one bit, it's all in how the guy or gal does it).

So he has one done, and lo and behold, they found protein in his spinal fluid, which led his neuro to proclaim "ah, there must be autoimmune stuff going on here, which qualifies you for IVIG'.

So I'm just curious. With all the tests you have had done, have you ever had a spinal tap?

Thanks, Melody

no..no spinal tap as yet..

but I haven't seen the neurologist yet either.. that's in two weeks..

Hey.. I am game for whatever they toss my way.. anything to find a resolution.. peace.. and some comfort here..

I know you all understand that!!

feeling the same
 

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. :rolleyes:

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 :winky: )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 :winky:

Good, Good, Good!!!

You are on your journey to find answers.

Full speed ahead!!!

Keep us posted. You have friends here.

Best of Luck.
:hug: