Frustration has set in and is not going anywhere any time soon!!!
 

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:)

Are you taking......
 

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.

And--
 

--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

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.

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.

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.

:hug:

These are the test that they have done since August of this year...
 

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?!

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

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.

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.

Again - don't mean to be alarmist. The level of C-reactive you put out there is as MrsD says extremely high and signals inflammation.

At this stage, I'd be going into the ER and trying to force an admission so inorder to be seen by a number of specialties. I personally have not heard of swelling such as you describe from neuropathy, although I guess anything's possible.

Sheltiemom

Ok...In September 2009 I spent 5 days in the hospital for a lump on my breast next to the nipple. My doc thought it was MRSA. They drained it. I was very sick and had a fever and was quarentined for those 5 days. It came back in december of 2009. They gave me a high dose of antibiotics and it went away, but came back again in march of 2010. They sent me to a breast specialist over in Columbus she scheduled me to have surgery to remove the lump. Had that done in May of 2010. In June of 2010 it came back (each time in the exact same spot) but this time it was seeping blood and pus from the sergical area. I called the breast specialist and she said to come over now, which we did. She drained the lump once again. There is still a small lump there. I have told my neurologist all about this. I had done research on the CRP and it said that infection could cause the test result to be high. I explained all of this to my neurologist and she did not seem to be concerned...her words "that is not my field of expertise"! My family doc is still insistant that it was MRSA and that i do not have sfn but i have carpel tunnel. The breast specialist said it was not MRSA? I do not know which end is up anymore? I am so confused by it all?

Do you know what antibiotics you were given?

If I were you I'd get to an infectious disease specialist.

Once that mrsa (or any staph for that matter) hits your blood stream, it is very difficult to treat and very dangerous. Fatty tissue in the breast can be isolating it, but you need a very good doctor to determine what is going on there. This infection can spread to your kidneys or worse.

Some of the antibiotics you may be given, may cause PN.

Get all your records and take them to a new doctor. If it were me that is what I would do.

No, I do not remember what they gave me. I have done so much research about all of this. Asked all the drs about Lupus and RA.They say no to lupus because I do not have the mylar rash across my face. I do have strange little blotches on each check but they said that was just acne. My face has always been clear, even as a teenager. But I have so many of the symptoms. Sudden blurred vision, I have always had perfect vision. My hair is falling out. My nails grow funny. My eyes are always dry and my eyelids seem to be twitchy. And anything on my body that bends is sore and swollen. I have sores/rashes in lots of places for no explainable reason. My short-term memory is awful to say the least. I bruise very easy. They said no to ra because the sedrate came back normal.Who knows? Obviously not my doctors?!

Ok? It sounds as if you've got more than one thing...
 

going on here!
It could 'be' that your neuropathy is either from your meds or your infections or something else completely!?
It SOUNDS as if your neuro can't be bothered looking at any reports your suregeon mite have sent...if any? If that's the case? I'd call your surgeon[Oncologist?] and get HIM/HER to call your neuro and say PAY ATTENTION! ..if that doesn't work? Get a second neuro appt! It IS after all, your LIFE we are talking about here?
The stress of this all, as well as the past surgeries and follow/up meds? They are essentially an INVASION of your body and add extra stressors. Each Time I've had a surgery? Lost Boodles of hair!- I'm defying fate, as I should be bald! Should you have an infection on top of this? Albeit a somewhat 'subersive' one? Well, yeah! Your hair will fall out! One can and does get blurry vision and just about each and every symptom you've described PLUS! I know, as I've had many of them all at different times.
Mrs D asked earlier? How IS your Thyroid? What are your AUTOIMMUNE thyroid #'s? They mite be key to some of your extra problems... they were for me! After I'd gotten Auto-I neuropathy diagnosis? I then got a Auto-I Thyroid diagnosis [Hashimotos'] And it could explain the hair loss and skin aspects too.
Some neuropathies are Insidious! I can't describe them any other way.
Sometimes, getting second opinions will either kick the current docs into gear or you'll find these second 'O' docs better to communicate with or just work with! I don't know about you? But the more BRAINS I've got working together on MY problems? The better I'm going to be treated!
Don't lose hope of faith in yourself! You KNOW somethings off-balance here, and, It's NOT YOU! Hugs and hope! Do let us know what's going on?
I for one am pulling for you! And I think a lot of other folks are too!
:hug::hug::hug:!!!!!'s - j

I would like to thank you all
 

for all the info and well wishes. Each doctor tells me that the other one was wrong?! I am at my wits end. In the past year and a half or so I have gone from a very healthy person with a good job with great insurance to unemployed and an emotional mess because of all of this. My thyroid was tested twice and came back fine both times, do not remember the # (memory loss at work again). Found all of my reports from all the doctors. The diagnoses the breast specialist gave me was "ruptured epidermal inclusion cyst with surrounding inflammation and fibrosis" yeah like I understand what the heck that means. And I will be sure to post what happens or the finding if any?!

What may have started as an epidermal cyst, obviously became infected....if you have that history of fever, etc.

Once the infection starts, it is a new ball game!

If you have drainage of pus, and blood still after all these months, something is wrong.

Hair will fall out after a trauma, or infection like you had. I lost over 1/3 of my hair after a major surgery from a C-section with exploratory.

Infection puts a huge strain on you... to heal you need good quality protein, and zinc in your diet.

The drugs they gave you? You need to know what those were.
Some of the drugs used can cause neuropathies. Flagyl, Levaquin, Zyvox...are some.

I think you should focus on that infection. Make sure it is GONE.
You need a current renal panel to make sure your kidneys are working correctly, now.

Gabapentin can cause low platelets and also hyponatremia, in some people. Low platelets= bruising.

If you did not have your PN symptoms BEFORE this surgical fiasco, then I would look to that, right now, and get it fixed once and for all. Sit down with pen and paper and write down what you had before the infection. And then the things that came after in another column. Take that to the new doctor, preferably an infectious disease doctor, to see what he/she can find out.

There is a form of breast cancer called inflammatory breast cancer which is confusing to diagnose.
http://www.mayoclinic.com/health/inf...cancer/DS00632

It is more common in younger women and may resemble an infection. I hope you don't have this.

And given the comments about cholesterol--
 

--c-reactive protein, and inflammation influencing cardiac events, thought I'd reiterate here what I just posted in another thread:

http://neurotalk.psychcentral.com/thread143794.html

Frankly, I do think you need to be looked at for lingering infection, and probably need a rheumatological (autoimmunity) work-up as well--you wouldn't be the first person to have an autoimmune cascade concurrent with or following a bacterial or viral infection.

Maybe I did not make myself clear in the earlier post. The lump on my breast never had an open wound, sorry for any misunderstanding. It was draining/seeping from the surgical site that had not yet healed completely. I have had 3 mamograms and 1 sonogram done when this all happened and showed no signs of cancer. I have had a rheumatological work up done, it came back ok. I was being treated for carpal tunnel before the breast lump appeared.

I called my neurologist yesterday to start asking questions about these tests and what they mean exactlly. She did not return my call until this morning. Actually it was the nurse that called me about it, with no answers just more questions for me and she seemed rather annoyed by it all. That was at 8:30 this morning. She said she would have the dr call me back it is now 2:00 and no call. I am so sick of being blown off!

Our doctor never calls back during office hours, but he has never failed to call back after hours - even into the evening - when he's not pressed for time to answer questions. He's even called on Saturdays when his office is closed to discuss test results or whatever. We've also never had to call him for test results; he always calls us first. I guess my point is I'd ignore the nurse's 'tude for the time being, and give the doc a chance. Pattern of behavior is a different story.

Doc

Sorry if I posted this previously, but has anybody checked you out for vasculitis?

Sheltiemom

I do not believe that was one of the tests..
 

and I am still waiting on the call from my doctor

I would call everyday till you get a call back. I have had many doctors not call back as well. I see you are in OH. I did not have the best luck there but can you see about going to Cleveland Clinic?
You know when I first came to this board 4 years I had such different symptoms then others with PN and RSD. I had the severe pain but not some of the other problems. As time past I did develop them but still some are not the same and that has made it harder to get proper treatment.
I would get another opinion and if you can just set an apt with a rheumatologist.
Hang in there and I am sorry for all you are going through