Hello from a new member: PN with numbness and tingling, no pain
 

Hello the Group:

Although my hands have been numb and tingling progressively for a year or two, with needle-like sensations going up my arms and sometimes to the shoulders, it was only in the last 2 weeks that my neurologist was able to definitively diagnose this as idiopathic polyneuropathy. And tell me that there was nothing he could do to help me.

I've read quite a few posts here and am looking for guidance. Importantly, I'm not in pain, though feel terrible for those who are.

All of my blood tests came back normal. I'm not diabetic, I don't seem to have a vitamin deficiency, and I don't drink alcohol. I did have cancer a few years back and was treated with radiation but not chemo. I also have Raynaud's Phenomenon; this causes pain, but compared to the continual feeling of slight pins and needles, and the clumsy fingers that make it hard to do small motions like button buttons, turn pages, operate a remote control etc., it's of much lesser concern.

I'm looking for any and all guidance from knowledgeable folks. For instance, I'm wondering if I should try acupuncture; and I've heard something about L-Carnitine as well (and have read some threads about it). It's difficult to get my head around the idea that I'll always feel this way. Since the doctor can't pinpoint a cause, he's unable to tell me whether or not I should ever expect this to abate on its own. He did mention that it could get worse and begin to affect my feet and lower legs. I have a slight sensation down there... but it's difficult to be sure if it's actual neuropathy or the Raynaud's acting up. (Raynaud's is a circulatory condition that reacts to cold)

Thank you all for your time and kind attention.

Balanchine

Well--
 

--the symptoms of Raynaud's can be easy to confuse with the symptoms of neuropathy, as they can feel very similar.

It is unusual, though for neuropathy to begin in the arms/shoulders. Noticing symptoms there first implies some sort of compressive, rather than systemic, etiology--possibly issues with the cervical spine, or compression of the brachial plexus or Thoracic Outlet Syndrome (the latter two are not well known entities, though we do have a forum here that covers these):

http://neurotalk.psychcentral.com/fo...sprune=60&f=24

I would think, if it hasn't been done already, some powerful MRI imaging of your neck, shoulders, and upper thoracic spine are indicated.

Glenn, thanks so much for replying. It's really the hands that are the issue, everything spreads up from them. The sensation of numbness began in the index finger on the right and went from there. About 8-9 years ago I had something called Parsonage-Turner Syndrome, which involves the brachial nerve plex. But it was only on the right, and it went away after some months of exercises.

I did have an MRI of the cervical spine. It was negative. And as far as confusing the symptoms with Raynaud's, that's a smart suggestion. But this is well beyond the Raynaud's, especially as I have continual symptoms that are unrelated to temperature. Raynaud's as far as I'm able to understand is more a question of attacks in response to cold. At any event, the recent nerve conduction studies show unequivocally - well, that's what the neurologist says, and I have to assume he knows this stuff - that I have the polyneuropathy.

Again, many thanks indeed for your input!

Raynaud's can be caused by other things then the cold. Here is a site:

http://www.cedars-sinai.edu/Patients...henomenon.aspx

It is interesting. Perhaps other diseases should be explored if they haven't already. Check out "Symptoms" for a list of things.

Kitt, thanks for replying. I do indeed know this about Raynaud's. Based on blood work my rheumatologist has ruled out any underlying condition. I have what's known as Raynaud's Phenomenon (or Syndrome) rather than Raynaud's Disease. For this I'm grateful!

I'll be seeing the rheumo again in a couple of weeks so perhaps will get more insight. But I'm fairly sure that I've got two things going on at once. And while like any body systems they're surely interconnected, I have a feeling that we're dealing with separate etiologies. As obscure as those might be.

Oh well!

I would urge you to get your actual test number result for any B12 testing you have had. This is because, lab ranges in US remain old and outdated and lows are reported as "normal".
The new low for B12 is 400pg/ml.

Also get a Vit D test done... it is very rare for a "normal" there also. The new low for that is 50.

Many people are told they are not deficient by their doctos and this is common and very sad.

Here is a video explaining B12 testing:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

Here is my B12 informational thread, with all you need to know to raise your B12 level:
http://neurotalk.psychcentral.com/thread85103.html
Neurological symptoms often precede anemia signs.

My PN was severe in my hands. ( I also had it in my feet, back when I was in my early 30's, but I attributed that to standing all day in a stressful job.).

I still have some flares in my hands. But mostly they are quiet now, since I had my long term hypothyroid situation fixed. I did sprain my right hand on vacation this year, and had to wear my nighttime carpal tunnel braces. Hypothyroid is one cause of PN in the hands (and feet) due to compressive issues at the tarsal and carpal ligaments. Hypothyroid people deposit a tissue in the periphery called mucin, and this compresses nerves.

Thanks, MrsD, I'll get the result number from my doc for my recent B12 test. I had gotten a D3 test a couple of months ago after going on a larger daily supplement (to prevent cluster headaches) and had raised it in about 4 months from 35 to 57. So I think I'm reasonably okay there.

I'm also taking 100 mcg Synthroid daily for hypothyroidism brought on by radiation treatment for throat cancer 4 years ago.

I've read some of the posts in the B12 thread you suggested... interesting stuff indeed. Do you think that for starters I get myself some B12 tablets and just dig in? I should add that I'm a vegetarian who eats fish maybe 3 times a month, so I'm certainly not getting much of it naturally. And if so, what should I be looking for in the brand labeling - anything in particular?

Many, many thanks for taking your valuable time to advise me!

More info shortly after my last post. Tried to edit it but couldn't find an edit button.

I have some B12 on hand and figured might as well try it. It's 1000 mcg tablets with the B as Cyanocobolamin. Just took one on an empty stomach and will continue when I take my Synthroid every morning early, at least an hour before any food.

After sending your post, the Edit box can be found on the bottom right side beside the Reply box.

Most of us here are using the Methylcobalamin version of Vit B12. you are correct, it has to be taken on an empty stomach.

Thanks much, IPN. For some reason I didn't see the edit box. Maybe my eyes are going bad too...

And if you recommend the methyl version I'll definitely pick some up!

Some of the NT functions are temporarily closed to new members until they pass a screening period by moderators.

This is done for all new members to screen for spammers.

Once you finished being a newbie, things like edit will open for you.

Methylcobalamin is better than cyano form, but you can use the cyano and see what happens. 10-30% of people cannot convert the cyano to active methyl in the body, so if the cyano does not work, you can get methyl form. Either online or some stores now locally do have methylcobalamin. Nature's Bounty at WalGreen's and Costco now carry it. There might be others now, that I am unaware of however. Read labels carefully.
The Costco one is a great deal... works out to 6 cents a day for 5000mcg. That is the one we use now here at home. I used to use Puritan's Pride one... and that one was good too. Long ago this product was hard to find... back then most of us used Jarrow brand at iherb.com . But those days have changed quite a bit.

Thanks once again, MrsD. I'm planning to wander out into the snow and sleet of Los Angeles today to pick up some methyl B! Would you recommend I do 5mgs a day at first, or should I stick with the 1 I'd started with yesterday?

Yes, I'd really do the 5mg methyl daily, on an empty stomach.
You have that Vegan history, which is very iffy for maintaining B12 levels. Not all of 5mg is absorbed you know, so it will just pass thru your digestive system and out into the toilet.

Only about 13mcg get absorbed orally from 1000mcg. That is not a whole lot. I suspect only about 20mcg from the 5mg.
RDA for adults is 2 to 4mcg daily.

MrsD: you're the best. Amazing that so little of the stuff is absorbed. Somebody's making a lot of money here...

But I digress. Sorry to keep asking questions, but I'm very new to all this. Does it make sense to space the 5 mgs out over the course of a day? There will always be hours between meals, maybe break the mgs up to 2-2-1?

Thanks again.

You can do whatever you choose. This intervention is about the cheapest you will find of any medical treatment anywhere!

I'd just take the 5mg each morning ... I did that for 3 months to test out Puritan's new methylcobalamin about 2 yrs ago. I tested at 1999. I just chew it up and swallow with a little water.

Works really well IMO.

And--
 

--it is possible that the hypothyroidism is contributing to your neuropathy.

Hypothyroid neuropathy is not that well known to most general practitioners (or even to a a lot of endocrinologists), but it is certainly documented, and often shows up in the hands/wrist/arms (it can present very much like carpal tunnel), in that low thyroid hormone status leads to mucin deposits in the tissues, which restricts room through which nerves but pass and often results in nerve compression--and this tends to happen more often in those places in which the nerves have to go through narrow spaces to begin with, like the wrist, elbow, and ankle. (Mrs. D has posted about this on these boards fairly often.)

See:

http://emedicine.medscape.com/articl...overview#a0104

http://www.neurology.org/content/67/5/786.abstract

http://neuromuscular.wustl.edu/msys/mend.htm#thyroid

Interestingly enough, many of the articles that delve into this most deeply come from France.

Glenn, thanks for that. I am hypothyroid and take 100 mcg of Synthroid every day. How that might figure into the PN I'm not sure. I've never seen an endocrinologist but will be seeing my rheumotologist next week and will ask him for his opinion. I'll also read those links you so kindly posted.

I'm also finding that my feet are beginning to tingle. Suppose this has been going on for some time, but since the hand sensations are so distracting I generally don't notice anything else. But last night lying awake in the middle of the night (per usual...) I could feel the tingling, with a shot up into the thigh at one point. Oh what fun it is to ride...

By the by, I'm finding that the B12 gives my stomach a bit of a churn when I take more than 1000 mg at a time. Hope that will quiet down!

To Balanchine and Mrs D.

Just a quick note on taking thyroid meds.

My mom was in her 70's before a dr EVER told her she needed to take her thyroid meds and hour before eating or drinking anything. They burned her thyroid up 51 years ago trying to 'fix' it on an Air Force base in CA. She was sooo out of wack 7 years ago and this info was like a miracle for her.

Something as simple as taking it and laying back down for an hour cured her spikes and lows with her thyroid. Weird that more people don't know that.

:)

I got lucky in that my general practioner dr said right away that my PN was from my thyroid, which is amazing.

Very little is talked about in person or on the internet about thyroid causing PN. Yes you can find info but not in mass quantities like things like diabetes, etc.

And some say if you fix thyroid PN gets better/goes away. I wonder if anyone here has ever had that happen?????

This happened for me. Took a year for my feet to wake up though. My hands are much better (not 100%) but better enough not to need surgery. This was many years ago.

Good for you, Stacy. I sure wish that would happen to me!

Oh, that did not happen to me.

My pn did get better initially when I started desicated thyroid meds, but in the year since then it has gotten worse. I just noticed today that my numb spots on my heels have completely come back, no longer numb. However the burning in my feet is the worse its ever been...well, not the worse, but it has gotten bad, can't work anymore, though I have learned ways to live with it.

MrsD are you saying you no longer have PN???? I did not know that!! That is amazing. I assumed since you post so much around here that you still deal with it.

I still have minor PN symptoms, but NOT the PN I had in my hands and feet back then with the hypothyroid. During my pregnancy 33 yrs ago, I lost 80% of the functions in both hands.

But after delivery, most returned. I didn't get diagnosed properly because my blood work appeared normal, but I did develop a goiter, that led to a radiouptake test, which was very abnormal, so then finally I was treated. By then my feet were numb pretty much, and my hands so so. I slept every night with carpal tunnel braces. My feet woke up slowly, tingling away, over time. The only numbness I have now are the tips of the two middle toes.

I do get burning sometimes too, but not often.

My PN is more or less stable now and not progressing at all.
I also have spurring in the left ankle and broken sesamoid bones in both feet. So those are mechanical problems unrelated to the compressive nerve problems I used to have with the HYPO.

Thanks all the more....
 

This is very good to know. And it makes it all the commendable that you've gathered and shared so much knowledge about many PN forms/ causes/ treatments. Thanks!

I couldn't agree more.

Here's something else: a friend with neuropathy saw a doc here in LA who prescribed prednisone. He took a relatively short course of it and says his hands feel 95% better. I need to get more info from him, but in our initial talk his symptoms sounded a good deal like mine. Although one doc told him that his problem might have been caused by a flu shot, which he got (for some reason) while he was in the throes of pneumonia. Go figure.

Anybody have any thoughts on prednisone for treating PN?

From: Peripheral Neuropathy Fact Sheet
Prednisolone for neuropathy

prednisone for peripheral neuropathy

Doc

Thanks, doc. I'll have a look at those links. At first blush I have a feeling that the prednisone treatment wouldn't be helpful, or perhaps I should say prescribed, for me since mine is idiopathic. My friend seems to be suffering from some sort of auto-immune problem, maybe Guillain-Barre and/or reaction to a flu shot. He said that after 2 months on the pred the sensation came back to his hands 95%. I'd take 50 at this point.

i take prednisone for respiratory infections,over 40 in the last 12 years, and the prednisone has not helped my peripheral neuropathy pain, numbnessor inflammation. my cause is toxins.

Appreciate your input, echoes - and really sorry to hear it hasn't helped!