mrsD

I had my heavy metals tested in June using a hair analysis test through a lab in Chicago. I tested extremely high for Gadolinium but I attribute that to the fact I had a MRI 13 days before i cut my hair for the test. They use Gadolinium as a contrast dye. Also, my mercury was just a tad in the yellow but nothing my doctor thought would be causing so much problems.

As for as any further testing (hereditary neuropathies, Autoimmune factors, etc...) I haven't had any yet.

I also worry that after 15 years on Paxil, the drug may have really messed up my system. If that is one of the reasons I am facing this pain, then I guess only time will heal and I will have to endure it. However, I am already finding out how difficult it truly can be.

I also find that if I have high glycemic or really sugary food, my pain shoots up. This is an issue, as I find all the Gluten free products to be made from white/brown rice, potato, etc.....

Hi Dan,

I have also wondered about a possible Paxil/neuropathy connection. I tapered off of Paxil in March of this year after taking it for 8 years. I was only taking 15 mg/d so I was able to taper off over the course of 2 months. I also experienced awful Paxil withdrawal including a "zapping" in my head. I came off the Paxil because I thought that it might have been related to the tingling and decreased sensation that I had started experiencing (approx. 1 year prior) initially in my feet and later in my hands. Similar symptoms have been described by some individuals on a website dedicated to Paxil withdrawal, *edit*. My neuropathy, however, went on to progress rapidly during this past July/August (I guess neither of us had a great summer). At this point the only parts of my body that are unaffected are my chest and upper back. While I have some discomfort in my feet, my symptoms are more of the pins and needles/numbness variety. I've been to 2 neurologists, neither of whom think that my symptoms are related to Paxil. Based on the timeline of coming off Paxil and symptom development, I share their doubts to some degree. A skin biopsy has confirmed non-length dependent small fiber neuropathy with no cause determined thus far (and not for lack of trying/testing). Interestingly, I have developed upper GI symptoms during the past few weeks. I saw a gastroenterologist on Friday and he started me on, guess what!...Omeprazole!! for GERD. Although I tested negative on serum for Celiac, he is going to schedule me for an endoscopy and will do a small bowel biopsy to look for any evidence of Celiac. By the way, prior to my GI visit, the neurologist ordered a fat biopsy to R/O amyloidosis, since I was now having GI symptoms in addition to neuropthy-I was very grateful to receive word on Friday that it was negative. Anyway, I just wanted to share my history since there did seem to be some similarities with yours. Please post if you get any feedback regarding a possible Paxil/neuropathy connection.
Take care,
Liz

--that B12 level of 545 was interpreted as high?

What units are being used, and what's the lab reference range?

Given the usual ng/Dl, that wouldn't be interpreted as high at all--many normal ranges in North America run from 200-1100, but in Japan they run from 500 or 550 to 1300, and many have no upper limit, as B12 has no known toxicity level. A lot of us think the North American limits are too low--many have had neurologic symptoms in the 200's, 300's . . .even in some cases up to the 700's . . .and if you've recently been taking supplements, that 545 may be artificially higher than it was even a short time ago . . .

Because most docs are waaay behind the times about B12 levels, there are varying degrees of acceptance regarding 'suspect' ranges.
Many feel that 500 or below is in need of therapy.
Others feel that anything below 700 or 600 is the 'suspect' range.
Definitely a reading of 545 is at the very least, borderline.

Hi Lizziebeth

Thanks for sharing. It is always comforting to know of other people that are going through the same thing you are, though I do not wish this on anyone. There are many people on the net that talk about PN like symptoms after coming off Paxil and Effexor. I have read many times that long term SSRI use can cause die off or shrink Serotonin receptors due to the body’s ability to try and keep balance. If you flood your mind with excess Serotonin, especially over the long term, it makes sense that the body would start shutting off the receptors. Then when you come off the drug, your body needs time to heal and readjust. Now, I don't know if my pain is from the Paxil, the PPIs or something else. I guess that is what makes this so difficult. I am still in the angry/frustrated/break down crying every moment stage and I need to somehow snap out of it. Can any of you give some examples on how you dealt with the pain emotionally?

I never knew there was a connection between Paxil and neuropathy,,,first time I have heard this. I took Paxil for years, yet my neuropathy started before I waned off Paxil. My neuropathy seems to be connected to my gluten intolerance causing B12 deficiency.

Thisis interesting about Paxil though.

After reading some of the stickies, I decided to take some advise and head over to my favorite healthfood store only to find out that Acetyl-L-Carnatine can only be sold by a pharmacist in Canada. Hope that when I finally get to see the Neuroligist he is open minded to this supplement. I already take R-Lipioc, fish oil, B. Vitamins but was going to add the Acetyl-L-Carnatine and Coenzyme Q10 to my schedule. Does it still make sense to just add the Coenzyme Q10?

The carnitine would be more specific. But the CoQ-10 helps some too.

If you Google "acetyl carnitine neuropathy" you will find many many articles on drug induced neuropathies and diabetic neuropathies etc responding to it. Carnitine is used by the HIV community, for chemo damage prevention and diabetic neuropathy. It is worth a try for you, I'd say.

Take your pick to copy to your doctor. I seem to recall that in Canada you cannot buy single amino acids without an Rx.

Its not that this is dangerous in any way, but Canada has its reasons I guess.

Do any of you have problems with your clothing rubbing against your skin. I am going nuts due to my shirts and pants rubbing up against my skin. I get this awful hurtful itch that feels as if my hair is getting pulled out at times.

I am the queen of, "It touches me, and drives me nuts." I can't stand my clothes to be tight, I prefer no socks, truly prefer no shoes (which can't be done most of the time), jewelry touches me, I hate coats, they are too heavy. Many people join us in this symptom of neuropathy.