[Karenswails]

everything i read says that pn is heat/cold sensitive. I am not. And that is starts in feet and can move to hands. My hands bothered me way before my feet did. I have been swollen from my thighs to my toes for a few weeks now, and my family dr and my neuro dr do not seem to be concerned about it. I actually believe that my entire body is swollen. I can barely get my shoes on, I can no longer cross my legs, having trouble wiping myself, i cannot wear my wedding rings because I cannot get them on. My neuro dr said, very nicely, "that there is really nothing more I can do for you". What the heck? I am so frustrated. They just keep offering me more medicine for depression...I am not depressed? I wish I could tell my dr's when they ask for payment that there really is not much more I can do for you? Not sure what I am asking but thanks for letting me vent

[invisable]

Originally Posted by Karenswails

everything i read says that pn is heat/cold sensitive. I am not. And that is starts in feet and can move to hands. My hands bothered me way before my feet did. I have been swollen from my thighs to my toes for a few weeks now, and my family dr and my neuro dr do not seem to be concerned about it. I actually believe that my entire body is swollen. I can barely get my shoes on, I can no longer cross my legs, having trouble wiping myself, i cannot wear my wedding rings because I cannot get them on. My neuro dr said, very nicely, "that there is really nothing more I can do for you". What the heck? I am so frustrated. They just keep offering me more medicine for depression...I am not depressed? I wish I could tell my dr's when they ask for payment that there really is not much more I can do for you? Not sure what I am asking but thanks for letting me vent

Gabapentin or Lyrica, it swells the body. I am taking 1200 Gab. and can hardly get my rings on and lets just say, am a little "rounder" than I was before. PN is very frustrating all the around (no pun intended!)..........from the dismiss of Doc's, to the way it can change relationships because of lack of understanding and people "just sick of hearing" it, to the side effects and tolerance issues of the drugs to (barely) control it. It can make one depressed...........who wouldn't be?

Keep venting all you like on here.........we understand.

[glenntaj]

--while the most typical presentation of peripheral neuropathy is slow and length dependent, starting in the extremities farthest away from the body center and slowly progressing upward/inward (the phenomenon is known as "die-back"), it certainly is not the only presentation. I, for instance, had an acute-onset (hours) body-wide burning.

There are many variations, and part of the problem is that symptoms of dysfunctional peripheral nerves may be exactly the same as symptoms of dysfunction in the central nervous system (brain and spinal cord, caused by demyelinting diseases such as MS, B12 deficiency driven subacute degeneration, spinal stenosis, etc.). One absolutely has to get to specialists in neuromuscular disorders and/or to neuropathy centers to get anywhere near a comprehensive workup if possible. Most standard neuros, never mind most general practitioners, just don't have the expertise to work with patients on this.

The Liza Jane spreadsheets are a good resource for suggesting tests to doctors when neurological symptoms are present, and for following test results over time to discern patterns:

www.lizajane.org

[Karenswails]

I am on 3600 mg of gabapentin and 100 mg of amitriptyline and day. I have been on 3600 mg of gabapentin for almost three months now. And have been swollen for about 2 weeks, wouldn't it have been swollen a lot sooner if this is the cause? And everyone talks about flares...I have felt like this since july of 2010, with exception to the swelling.

[mrsD]

Gabapentin is excreted whole from the kidneys. It is not metabolized by the liver. This places alot of stress on those kidneys.

Some people get edema and swelling from it and I suspect the kidneys are not working well when this happens.

http://doublecheckmd.com/EffectsDeta...12968&eid=2571

So getting a renal panel may show you are not working well in the kidney area.

You don't have to have PERMISSION from your doctor to taper off, or reduce your medications. Gabapentin does not heal anything and if you are worse off with it, then you need to decide about that. You cannot stop it quickly, if you have been on it more than a month or so. It has to be tapered off. You need to tell your doctor you cannot tolerate this effect and to help you taper down. Then see if your swelling goes away. That would be your answer.

Patients have the right to accept or refuse medications.
I think your swelling is not normal, and needs to be taken seriously. When you started this medication your kidney functions may have been different. A sudden change like you describe may indicate your kidney cannot handle this drug at this dose.

You also should have your thyroid checked. I had terrible carpal tunnel in my hands when my feet were so severe, back when I was hypothyroid.

[darlindeb25]

I wish I had something to add, just wanted to let you know my thoughts are with you. I know that doesn't help much.

I can say, my neuropathy started in my hands..my feet didn't follow until a few years later. We think mine is from B12 deficiency because of gluten intolerance. Thankfully, I do not have much pain for now. Mine is more in the irratating nature, buzzing, numbness, balance issues, and such. I do take 5000mcg of B12 daily, going to see how I do on 3000mcg, since my B12 level is so high now.

My neuropathy didn't seem to change with weather either, until this year. It has been very cold here on Long Island, and the cold does seem to be effecting me this year. My fingers are numb all the time, Raynauds has returned with a vengeance this year.

[Karenswails]

CBC + AUTO DIFF (this test done twice)
HGB A1C
URINALYSIS WITH MICROSCOPIC
URINE CULTURE LAB USE ON
NEURO QSART (QPN)
MRI LUMBAR SPINE WO CONTRAST
SED RATE
C-REACTIVE ULTRA SEN
ANA PANEL BLOOD SCRN
COMP METABOLIC PANEL
TSH BLD
VITAMIN B12 BLOOD
VITAMIN B6/PYRIDOXIN
VITAMIN E/TOCOPHEROL
FOLATE SERUM
METHYLMALONIC ACID
PROTEIN ELECTROPHORESIS W/INTERP
PROTEIN ELECT RND UR W/INTERP
EMG(NEURO/NI) (this test done twice)

The only test that came back abnormal was the c-reactive ultra sensitive. My score was 10.7 and it says that the normal or acceptable score is 1.0 to 3.0. But, yet again, they did not seem to be concerned about it?!

[mrsD]

The renal would be in the metabolic panel.

A level of 10 for C-reactive protein is very high.

dangerously high.

http://www.americanheart.org/present...dentifier=4648

[Karenswails]

well...i thought that was kinda high but they just told me to take 81mg of aspirin a day it was nothing to worry about? they told me it was just an indicator that I am a higher risk of stoke or heart attack. My blood presure is 120 over 80 every time they take it. And my colesterhol is ok. So plese enlighten me and tell me why it is dangerously high, please.

[mrsD]

Elevated cholesterol does not cause a heart attack. (there is controversy as to what constitutes "elevated" anyway)

Inflammation does. Inflammation damages the lining of blood vessels, which then entrap clotting factors and cholesterol (any cholesterol, it doesn't need to be high)...to act as internal bandaids ....to patch the damage. Newest research shows this is what causes the problem.

One can reduce C-reactive protein using Vit C.
There is some evidence that Vit C helps lower CRP
http://www.ncbi.nlm.nih.gov/pubmed/18952164

This link suggests 500mg a day is enough:
http://scienceblog.com/community/old...20048372.shtml

My doctor ran a CRP on me over a year ago and it was .5.

Then 3 mos later did another, and it was 1.5...why? because during that test I was having a root canal. The inflammation from that was enough to raise it.

If I were you I'd read up on this topic, so see how else you can lower that reading. Perhaps whatever is causing your CRP to be elevated is inflaming your nerves as well. The two most common culprits are Rheumatoid arthritis and Lupus.

Some doctors don't keep up with this new research.