Hi all - new to PN
 

Hi Everyone

My name is Dan and I am quite new to PN. The pins & needles started in early July of this year and only happened if I took a hot shower. The feeling started to progress over the summer and was quite worse on hotter days. What started in my feet and hands moved up my arms and up legs and spread across my whole body. It is quite scary how fast the PN has spread and increased in pain. I am scheduled to see a Neurologist in the next month but nothing happens fast when it comes to the Canadian medicare system.

I have two suspects as to where my pain came from. First off, I just recently finshed a long 2-1/2 year taper of Paxil on August 24 after over 15 years on the medication. The withdrawal was horrible but I finally was able to make it. Throughout the whole taper, I faced many weird CNS issues such as muscle twitching/tics, sleep starts (jolting right before falling asleep), dizziness, the horrible SSRI withdrawal "zaps", etc... Could Paxil have damaged my CNS after 15 years on the drug and that is what is causing my PN?

The second suspect is that I have been on 5 different PPI medications over the past 4 years for stomach pain. I had numerous scopes and was diagnosed with a hiatus hernia with mild barrett's esophogus. The Gastro wanted me to stay on PPIs the remainder of my life. During the whole time on these drugs, my stomach has gotten worse. I finally had a integrative doctor (MD but natural focus) in August that I went to see about the symptoms from Paxil withdrawal and he stated that the PPI was probably the culprit causing the PN. If you google side effects from many of these PPI drugs, a lot of people are complaining about pins & needles. I have stopped taking the PPI as of 13 days ago and my symptoms continue to increase.

My new family doctor has prescribed me gabapentin (Neurontin) by I am so scared to try it due to the side effects. However, the pain continues to spread and increase in intensaty and I don't know where else to turn. I am glad I found a forum with people that are facing the same thing I am.

Welcome to the PN forum!

I'd start with a B12 test and test for Vit D.

PPIs prevent the absorption of several nutrients.
B12, folic acid, calcium, magnesium, zinc and iron.

Certainly a low B12 level leads to nerve damage. Your levels for it
should be 500 or above. Anything lower should be treated.
The US still has antiquated "normals" so make sure you get your numbers if the doctor says "normal". There is a B12 thread at the top of this page.

I would also try a tryptophan supplement combined with some B6. SSRI drugs result in lowered serotonin synthesis and many of the withdrawal symptoms reflect this low level, until the body starts making it like it should.

Vitamin D has recently been showing in new studies, to be very low in most Americans.
There are two videos on this thread:
http://neurotalk.psychcentral.com/thread92116.html

Depending on your age etc, there can be other causes.
But these appear to me to be the ones to look at to start.

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/1...ResultsPanel.P

if these links dont come up properly....just go to pub med and put in "barretts esophagus celiac....
with depression, stomache issues, and now barretts, you are probably in need of a work up for celiac disease.....go to the gluten sens. forum here and read the gluten file....and did the doc mention that barretts can be precancerous?

I agree. Have any of these doctors even mentioned celiac or gluten intolerance. My neuropathy was caused by gluten. You do not have to have celiac disease to have damaged caused by gluten. So many of your symptoms can be traced to gluten. Check it out.

Thanks everyone for the quick response. A little more history about me:

The doctor I was able to see in August was 600 miles away from my home but he specializes in SSRI/benzo withdrawal, plus is one of the world's most renowned doctors specializing in natural methods to help with MS. He doesn't usually see people one on one anymore but a friend of mine was able to "pull a few strings." Unfortunately, he doesn't have the time to be my regular family doctor (nor does it make sense do to the distance between us).

The first thing he tested was my vitamin B and D levels, with the results showing higher than normal (Vitamin B 12 was 545). Due to the supplement program I take to help with the SSRI withdrawal (Point of Return program), I already take 4000 IU a day of vitamin D. He also suggested starting a Gluten free diet which I implemented August 24.

I have found a new family doctor in my city who has scheduled me in to see a Neurologist plus a MRI scan and celiac testing. The "process" was taking a little too long so I went to the ER last week and had the ER doctor help speed things up. For those of you living in Canada, many of you know how slow our system can be. Both my new doctor and the ER doctor prescribed me Neurontin but I am so scared to try anything new, especially since I haven't had much luck in the last little bit with prescription drugs.

I have just recently started IV treatment using a Myers cocktail followed up with Glutathione. I plan to add a B-Complex supplement to the multi-vitamin/multi-mineral I take right now. I have tried R-Lipioc a few weeks ago but it seemed to upset my stomach. I plan to try and restart it this week.


Hi Pabb, I well aware that Barrett's can lead to cancer. However, I used to live a lifestyle in which I would drink 3-4 beer a night plus add greasy restaurant food right before bed (travelling sales rep). I changed this way of life 4 years ago (sober for 3 years) and heartburn was never an issue. The pains that I have experienced has been from something else and I think I finally pin pointed it this past few weeks since coming off the PPIs. All of the sudden the gut wrenching, knife like pains I was feeling are starting to really let up. Gastrologists only have so many weapons to use and they seem to always push PPIs for a majority of the stomach ailments that they see (just my opinion).

So I have all the required tests scheduled but it probably is still going to be a good 3-4 weeks before I can get in to see anyone. As my symptoms continue to increase and the pain worsens, I think I am stuck with having to try the Neurontin. I also plan to implement some of the suggestions in the stickies and see how they work.

Also, just so everyone knows, I am 30 years old.

Have you been tested for heavy metals?

Have you been tested for hereditary neuropathies, like Charcot Marie Tooth?

Autoimmune factors? (these may elevate following vaccines, or infections).

Glutathione has been used for a drug induced neuropathy, from the antibiotics called fluoroquinolones. Information about this can be found on
http://www.medicationsense.com/fluoroquinolone.html
and
http://www.medicationsense.com/artic...ity070508.html

PPIs and neuorpathy
 

I have heard connections made between neuoropathy and proton pump inhibitors before. I take the PPI Achipex for GERD. I have small-fiber neuropathy, but my neuor believes its due to impaired glucose tolerance. Anyway, is there any hard data that supports a link between PPIs and neuropathy?

this doc is a hmmmm angel, saint, something!!!! couple of points, if you are taking the B12 daily.....and were right up to the test...it was falsely high, so you might want to up that dose a little....and the celiac blood tests done too long after the beginning of the gluten free diet are going to be negative even if you are a celiac.......you could try enterolab by mail.....what was your Vit D level? if you are a big guy and it was only a little over the mid point, you might want to up that a little too......i am soooo happy for you that you managed to see this doc!

There are studies showing acid reducing drugs, lower the absorption of B12 and the other nutrients I listed.

When that happens, neuropathy may occur.

The most studied PPI is PriloSec...since it has been on the market the longest.

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

And--
 

--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." :winky: 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.

Dan, most of the time shoes and socks are torture to my feet, but now that my PN had progessed up the back of my calves, pants bother me as well. (it also takes away my one refuge from foot pain, which was to sit in a recliner and hang my feet over the edge :()

So yes, many of us understand. You get so tired of hearing "try this, it's so soft that it shouldn't bother you at all" from well-meaning people who don't understand that if it's touching you, it's bothering you. I didn't understand it myself when my mother got shingles on her neck and shoulder (before I had PN). I would buy her soft sweaters and scarfes but none of them helped. I understand now--sure, soft is better than scratchy, but it's still touching me!

I have tried to hold off on any meds for my situation but I am becoming overwhelmed with the pain and I can't seem to manage as a husband, father and employee. I am so scared to try anything new, due to my horrible experience with Paxil and PPIs. I plan on starting Neurontin tomorrow and pray that I don't receive and horrible side effects from it. Have any of you had any bad experiences with this drug?

I've been on it for almost a year and haven't had any trouble with it. On the other hand, I can't really say whether it's helped my pain all that much and I'm up to 3600 mg/day now. It might just be because the NP has gotten a lot worse over that period of time, so maybe I would be in even more pain if I weren't on it. I'm wondering if I should try something else like Cymbalta. Like everyone is always saying, we are all different.

My mother is on it too--when they increased her dosage, she complained of drowsiness. But she's 87 and seems a lot more sensitive to meds than I am (I'm 53).

I sure hope this med trial goes well for you--sounds like you really need some relief. :hug:

So I screwed up on one of my posts about my B12 level. When tested in August, I had a B12 of just over 1500. I recently had blood taken again (my new doc tested me for everything) and my B12 is now over 1700. Makes sense since I have been taking B12 for the past month.

The only thing I was low was my C4 test. It stated I was at a 0.17 and the normal low was 0.18. Anyone have any info on this test?

I was just wondering if any of you experienced a really quick onset of your symptoms (1-6 months) that spread across every inch of your body?

Mine did that in days--
 

I experienced an acute-onset body wide burning sensory neuropathy (no motor symptoms, and normal nerve conduction and EMG studies--twice--indicating no noticable myelinated large nerve involvement).

Only abnormal test results that ever showed were a very abnormal skin biopsy, indicating considerable destructin of small, unmyelinated fibers, adn a slight positive on Cornell-Weill's own gross antibody agglutinin test,, which indicates some sort of autoimmune activity--although, since no other antibodies showed positive, it seems these wre unique to me, bolstering the post-infectious atuoimmune mimicry hypothesis. (No cause has ever been definitively found.)

Dan,Glenntaj,
As I indicated in my previous reply to this thread, although my sensory neuropathy started out slowly, progressing over a period of 18 months, my distal involvement has become body-wide over the last 3-4 months. Unfortunately during the last few days I have developed "burning mouth syndrome" , and I'm beginning to notice more burning sensations distally in addition to pins/needles and numbness. So I'm off to the neurologist tomorrow. Although I've been hoping to hold off, It looks like I'll be considering medication to deal with my evolving symptoms.

Dan, thanks for the response to my PM. Although it might have been too early to make an adequate assessment, I stopped the Paxil after 2 weeks in view of the on-going progression of my symptoms (and I was also very afraid of having to deal with withdrawal again). Thank you for sharing. I'll keep you posted and hopefully maybe we'll both eventually see improvement.

Glenntaj,
The relatively rapid progression of my sensory symptoms (by the way, my skin biopsy result was "0"), has had me concerned that I might move on to developing motor symptoms. I found it reasssuring that it sounds as though despite your body-wide small-fiber involvement, you don't seem to have gone on to developing motor symptoms; but I know that there's no way of really knowing...that's the scary part.
Take care,
Liz

Fortunately--
 

--a neuropathy of the small, unmyelinated fibers that subsume the sensations of pain and temperature will by definition be a sensory, and possibly autonomic, neuropathy; those fibers have no motor component.

Unfortunately, since the small fibers are also involved in autonomic response, such neuropathies often have effects on such functions as blood pressure, sweating, and sexual response, though for many the effects are not large, often remaining "subclinical":

http://neuromuscular.wustl.edu/senso...tml#idiopathic

Many neurologists disagree on the the extent to which neuropathies can present with only small-fiber effects; some think that whatever is causing such "axonal" damage is likely to have some effects on the axons of even myelinated nerves over time, and that can have effects on the senses of vibration, mechanical touch, and position, and/or motor effects. Motor neuronal tracts tened to be deeper within the fiber boundles of larger, myelinated nerves, though, so they tend to be affected more slowly, if they are at all. Even in compressive syndromoes, it takes more compressive force to disrupt them--not that that can't happen, but the sensory symptoms are usually first in those cases.

Personally, I believe neuropathies with an autoimmune etiology may more likely stay confined to one type of fiber or antoher, due to the difference in sturcture among fibers and the specificity of antibodies ("molecular mimicry"). But add other things to them--glucose dysregulation, compression--and more global symtpoms are likely.

Neurontin
 

Did nothing for me, even art 4000 mg per day, so I'm off of it now. Didn't have any bad side effects though, and am appearing to recover. *