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!