Hello Folks, I am so glad to find this website.

My problems started with my left pinky finger started going numb during sleep and waking me up. The numbness & tingling then spread over the next few nights into my left index finger too. Then the tingling and numbness crept into the left forearm, then it all started in the same right hand & arm too. Now it is in my right foot.

I have had high blood pressure for awhile, but since this all started, now the numbers are really high, like 160/108. I am on blood pressure medicine now, but when these attacks are going on, the number go right back up.

I had a thyroid blood test, all tested normal.

Does anybody else have symptoms like this?

Oh dear, that dosent sound good. Mine started of in a similar manor.
Time to see a Neurologist & get some tests done. If a cause can be found, there may be a cure. No cause for mine was found, so I have to live with it.

Hello Numbfoot,

Can you tell me what tests you had so far?

Well it started with a spinal MRI for a suspected pinched nerve as I was having back problems as well.
Then nerve conduction tests to locate the effected areas.
Then numerus blood tests, for, to list a few, if you know what they mean: HIV, RPR, TPPA, Hepititis A B C, Lead Levels, Porphyrins, ANNA-1Hu & 2/Ri, Purkinjie cell antibody, Rheum Fact, B12, Thyroid, Ana Master Panal, Glucose & Hb41c, Anca, CRP, Calc & Phos, Renal F, CBC, Coeliac, Autoantibobies, Protein Electrophoresis.
Then a lumber puncture, several Xrays & a nerve biopsy

Mine started innocenty enough too - woke up one morning with right foot and hand completely numb - had been fine the night before, then started literally falling over..... the docs poo pooed it at first - said would just go away, that it was post viral... I finally got to see a neuro - who started running tests asap as the NCS she did the very same day showed damage - and that was 10 years ago... it has never stopped progressing - but at least I know they have done all the tests and treatments out there the could help... have you looked at the stickies? check out the liza jane spreadsheets - if you can find the cause now the faster you move the better if there is a way to "treat" in any way.... (you've already had some pretty telling tests - were they all negative???????)(especially the ANA, LP, and nerve biospy - at least it sounds like you have a very motivated doc which is great)

Keep searching.....

Ah, kmeb I guess you are replying to my post.
Yes all negative, unfortunately.

Sorry Starla I didn't mean to steal your thread.

numbfoot - you're right - i did.. sorry!

but starla - same advice - numbfoot has had a goodworkup so far - and i've had all those tests too and more (been sick for long time) - again, check out the lizajane spreadsheets.......

do you have a good neurolgist???? are your symtoms intermittent and then your blood pressure goes up???? there are conditions non-pn related that can cause numbness, high BP, etc..... and those should probably be checked too.... in any case - most important is to quickly find a doc who is concerned and will act on your behalf!

Hi there. I was diagnosed with PN just this week. The cause is still unknown. The tingling and numbness is driving me nuts. It started in fingers and toes. Has overtaken almost my whole body. My feet and hands get very cold at times and it feels like I have a tight band around my back and stomach sometimes. My thighs ache ocassionally, my head had a lot of pressure in it but that's not so bad now. And sometimes my feet feels as though I'm stepping on something. All of my tests have come back normal: All blood tests for vitamin deficiencies, thyroid, sugar. Also- my echocardiogram, Mri with and without contrast. My kidney and bladder tests. I just went to the University of Michigan Hospital this week. Saw a Neurologist- I had 9 more tubes of blood drawn. I am soooo frustrated.

OK, I'm hijacking again I think - but Jeanbell - sounds like the PN is moving superfast - if they dont find auto-immune markers it in your bloodwork or other indicators for PN cause - maybe have other workup for anti-immune conditions like LP (will show possible CIDP and ??) - sjogrens biopsy, etc, skin biopsy, etc... the faster you are helped they react and take action, the better.... (the fact they are doing so much blood work etc is a good thing - sounds like another proactive doc!)

hang in there....

Hi Jean,

Have you been tested for MS? There is something called the MS hug that sounds like your symptom.


Hi KMEB

I will check out those spreadsheets; don't worry about hijacking threads, any input is good at this point!