Much needed advise please...I'm so confused .
Hello all. I thank you in advance for any opinions here. My hell started 5 years ago. I was 35 now 40. Ill try to make it short. Five years ago in the middle of the night I woke up with both hands dead numb. I couldn't shake it if, and in the morning both hands were inflamed swollen and numb whenever I raised them such as driving, being on my phone ect.... I could barely touch a thing. I couldn't even open a door on my own. This went on for 2 weeks and the inflammation went down but not the numbness. I first went to hand specialist...negative CT syndrome....went another few months with no clue what could of happened to me. Next a rheumatologist at university of Miami. She did a slew of bloodwork. Lupus, HIV, RA factor, inflammation,ect.... Perfectly normal for everything. No thyroid issues , not even inflammation showed.... Ok. So I go on to a Neurologist, and he does MRI and testing for MS, nothing negative. I wait a year and the numbness turned into pain, tight, swelling ripping whenever I'm not moving my hands..(all night during sleep) or anytime they are still. Numbness not so much an issue these days....after rounds of the same specialists over and over in different offices for opinions I kept hearing I'm a medical mystery. And nobody knows what it is. I recently moved and went to general practitioner that feels its auto immune...did the whole blood work up AGAIN normal perfect...EMG normal, had the needles and the electrode stuff done..head to toe. Negative... She sent me to a Neuro surgeon and he looked at my EMG and records ( she tested for all metals as well) and he sent me to yet another hand specialist thinking its arthritis of some sort because my fingers are swollen like sausages. The hand guy looked at my records and my hands did X-rays and said perfect joints..no arthritis ...he looked at my hands with ultrasound right there in his office and saw swelling around the nerves and called it peripheral neoropathy...then I went for opinion number 1000 it seems and they are an integrative Medicine place...they all said not PN ...negative nerve study and are doing food allergy testing. I'm so confused....can you have it with a neg study? And my pain...not numbness as much anymore but the tearing burning and sometimes fingers get stuck bent and almost feel dislocated! And all night sooooo swollen and stiff. I'm losing my mind. Not sure what to do. sorry for any mis spelling. I guess I'm wondering if this sounds like PN or something else? Any answers to any of my questions I appreciate... I'd like to know how neurologists and all didn't say PN all these years...but the hand surgeon said it was... Thanks guys and sorry so long

Do you ever have periods where they go down some?
Do you have periods of shortness of breath, throat feeling tight, or swelling of the face/neck or other body parts. GI cramping and or vomiting?

Are the hands discolored? The tips especially? Does the color vary?
Is the skin really stiff? What color are the nail beds?

Do you have copies of your tests? Did they do a B12 test? Do you know the numbers?

Anyone in your family have this, or other forms of periodic swelling?

What medications do you take? Do you use oral contraceptives?

Did your doctors give you a diuretic to see if they go down?
What happened if so?

Have you ever soaked them in epsom salts?

Yes I've been tested for b12 and all, I don't have results but can get them, actually they were high she said but I had been taking b12 for a year...I will get the results and post....I do not have swelling but I DO have extreme bloating most times, horrible horrible gas.....from most foods, nausea at night at times mild....constipation and opposite ( hate the word) IBS for years.... I have put on 15 pounds yet I exercise every day ...lots of cardio, I've always been in great shape...but the past years I am gaining... I get so bloated it hurts so bad... There have been very little short times where I felt a little better but never for long... I can't at this point tell what makes it worse or better, it has a mind of its own. I had mono when I was a teen...mild mono and test possitive for Epstein Barr once years ago but negative in others after... I get totally fatigued a lot ...at times I wake up in total fog and cannot shake it off most if the day. I hope I answered all your questions and I thank you so much..I feel so alone

No diuretics ....no oral contraceptives ever...never soaked...my family not at all..the color is healthy nails great...if anything my hands and fingers are reallllly warm...

There is a condition called hereditary angioedema.

Doctors don't screen for it typically. The tests involve measuring 2 or more immune proteins in the blood.

I am going to give you a website, that is pretty detailed.
It explains the blood testing for each subtype of HAE.

http://www.haea.org/professionals/diagnosing-hae/

This is the most complete site I've found on the net.
Angioedema is difficult to diagnose and many doctors miss it.

This link shows a swollen hand....in the patient in the photo only one hand is swollen.
http://www.cinryze.com/hcp/hae-symptoms-triggers.aspx

The swelling from this condition is typically not red, or discolored. It comes from fluids leaking out of the blood system into the tissues.

Thank you....I checked it out...my symptoms not not consistent with this... Could food allergies do this? Does mine sound typical of PN?

It is possible for some .... gluten intolerance would be the most likely culprit.

If allergic you should see improvements with using antihistamines like Benadryl, and H2 antagonists like Zantac.

Allergic reactions often have redness, tingling, and heat.
The only way to test this accurately is to go on an elimination diet.

The swelling in your abdomen, may be the fluid swelling up in the intestines. This messes up motility and results in gas because of the bacterial overgrowth that may occur. Absorption of nutrients may be affected because the intestinal walls are so swollen up food cannot pass thru the lining.
GI symptoms are often the first sign of HAE.
And not everyone gets the same symptoms, and this complicates diagnosis.

Some foods release histamine, but you can block that with antihistamines and H2 antagonists. You can see an allergist, who BTW will also possibly be certified to evaluate for HAE.

Epstein Barr is implicated in causing lymphoma. However, most likely if you had this, your arm(s) would be swollen too. Lymphoma can cause backup of fluid in the lymph system. This can occur in the abdomen or elsewhere. The fact that yours is only in the hands, doesn't suggest this.

You can try wearing the wrist splints for carpal tunnel anyway.
These keep the wrist in a position so that fluids can enter and leave the hands, properly and not build up. The carpal tunnel is very tight in some people. There are also compression gloves, made for those with arthritis:
http://www.lymphedemaproducts.com/sh...FYw-Mgodxy8AHw

Lastly there is TOS--thoracic outlet syndrome.
Here is our forum on that:
http://neurotalk.psychcentral.com/forum24.html

The swelling in allergic conditions is mediated by histamine.

The swelling in HAE is mediated by too much bradykinin.

Since the causes are very different antihistamines do not work much for HAE.

Your description "a mind of its own" is more like HAE IMO.
In HAE bradykinin cannot be metabolized away properly and builds up. When a trigger presents it dumps into the system causing swelling.

There is a swelling potential also with Crohn's disease. This is gastrointestinal inflammation. Mostly this can be with the feet,
but any site can be affected.

PN can be primary or secondary. Secondary is caused by something else. Certain when things swell up the nerves get pressed on and signal that. Fix the secondary cause, and the nerve pain goes away.

Keeping a daily journal of what you eat and what your discomforts are may help you pinpoint what is doing what.

Thank you so much....any suggestions on how to track down an allergist that could look for this in me? Good it sounds not good. I suppose my allergy testing is a good start.

Google your location and the keywords "Allergist immunologist"
or call your local hospital for a referral.

Not all allergists are immunologists, but many are both.
I would get the compliment testing and inhibitor levels done.
Rule it out, if possible.

When you find a doctor, do a Google on them for reviews.
Sometimes that helps avoid frustrating types.