May 17, 2011

Hello everyone!

I was intrigued by recent comments on this forum regarding a fairly-quick diminishment of Small-Fiber burning symptoms after taking a dose of regular "Alka Seltzer".

I was suffering from a flair of Small-Fiber burning in the palms of my hands this afternoon, whereupon I then dropped two tablets of Alka Seltzer into water and swallowed the entire dose.

Unfortunately, I did not notice any improvement in symptoms either immediately or over several hours, which does not mean that others might not have a better response.

Comments? Mrs. D?

Thanks!

David

What it may mean is that your process is not inflammatory and not dependent on acid/base issues.

The AlkaSeltzer response is pretty localized to specific chemical triggers.

If your burning is localized to only your palms? Try Biofreeze and see if that works. Localized burning in small areas (as opposed to all over), can be managed with the menthol in Biofreeze.

The palms, are they the only place you have burning?

Burning palms suggests something you come in contact with (soaps, degreasers, solvents).
Do you have redness, or peeling skin there too?
Red palms can also be a sign of liver problems.

Hi Mrs. D!

No, the burning is not confined to my hands alone, although that is the location that has bothered me the most over the years.

My odyssey began in the spring of 2005, when I first developed facial discomfort that ultimately turned out to be irritation of my 5th Trigeminal Nerve. I experenced burning and numbness in my cheeks, forehead, along my Eustachian Tubes, ect.

This was also approximately three months after successful sinus surgery.

We never found a cause, and it eventually cleared-up several years later.

During the winter and spring of 2007 (and after a very stressful period in my life), I developed burning in my hands, forearms, burning over and in my knees, mild numbness bilaterally in my feet and toes that came and went, and sometimes in the middle of my back. My first symptoms were arms and legs that went to sleep easily, and the sensation of isolated "nerve pulling" in individual fingers and toes!

I should also mention that one very early symptom (begining circa 2006) was that my feet would both have a tendency to go numb on me AS I was walking. This would occur only afer I had walked several miles nonstop.

I was finally dignosed with Small Fiber Neuropathy in April, 2008 after my Neurologist at the University of Washington did the excellent Therapath skin biopsy, which showed a bilaterial length-dependent distal small fiber neuropathy of unknown cause.

Fortunately, my neuropathy overall has gotten much better since August of 2009, and when I do have flairs (generally due to stress) it tends to now be primarily in my hands.

I have had complete neurological workups with multiple normal brain MRIs, normal EMG and Nerve Conduction studies, and essentially normal bloodwork.

The only differentials we have turned-up are an "IGG Para-Protein in the Kappa Band", which first appeared at the 0.2 level in July, 2006. It has since since slowly risen to 0.6 as of my latest annual exam in December, 2010.

I had it evaluated at the Mayo Clinic, and was told that it was likely not contributing to my neuropathy (and especially at that low titer). Further, I learned that it is the "IGM" varient and not the "IGG" that can cause neuropathy (like CIDP).

As an aside, I am now 51 and understand my risk for Multiple Myeloma is only 11% in the next 25 years, so I am not losing sleep over it.

I also have mildly elivated blood sugar, with an average A1C of around 5.7 - 5.9, fasting blood sugar of around 100, and two-hour readings of around 140.

As my small-fiber neuropathy has subsided in recent years, it was replaced by nerve pain bilaterially in both large and small joints (finger joints, toe joints, both wrists, bilaterally in both knees, both elbows, ect.), yet with clean X-Rays that do not show any Osto-Arthritis or swelling.

I also have considerable joint "cracking", especially in both wrists and both knees.

My Sedimentation Rate is also normal along with consistantly negative ANAs.

Over the years, I have also suffered from considerable bodywide twitching and nerve "buzzing", which became much better after I began using "Mag-Tab SR" Magnesium daily (thank you, by the way, for that helpful suggestion!).

However, this also suggests that something was depleting my Magnesium (perhaps the low-dose AZT water pill that I take for blood pressure?). I am also 5'8" and weigh 180 pounds (20% overweight).

I also have some photophobia (light sensivitity) and considerable "veiled-glare", which may be due to early-stage (Stage 1) cateracts. However, these vision issues also began around 2007 - 2008 when I was only in my late 40s.

I also developed a big flair in bilaterial Tinnitus in the spring of 2010 that slowly resolved several months later.

Well, you really got me going, and with that said does any of this sound familiar?

Thank you!

David

--multiple factors contributing to the neuropathy.

But that IgG Kappa protein should be watched, and not only for possibility of blood disorders--any pararprotein, or monoclonal (M-protein) can cause neuropathy through interaction with nerve epitopes. The most common of these is actually demyelinating (as opposed to axonal, which small-fiber neuropathy by definition is)--the interaction of monoclonal antibodies with anti-MAG (myelin associated glycoprotein)--but people with paraproteins often have interactions with both larger and smaller fibers.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

http://neuromuscular.wustl.edu/antib...imdem.html#mag

Which diuretic are you on? What is AZT? That is an abbreviation for a retro viral drug.

HCT...is hydrochlorothiazide. A diuretic. This depletes thiamine B1, magnesium, potassium, sodium, zinc and phosphorus.
Loop diuretics like furosemide, deplete thiamine much more.
But HCT also increases urea, and uric acid.

Going back to the sinus infections... did you use alot of antibiotics? Do you remember which ones?

It is possible that you have a low grade infection somewhere that is flaring in you and going quiet?

Have you been tested for H. pylori infection in the stomach?
If you search Google on H. pylori neuropathy you can find many papers linking the two.

If you were on antibiotics alot, I would also suspect Candida overgrowth. This would put a huge drain on your thiamine intake. So trying Benfotiamine may help. Candida puts out alot of aldehyde as a byproduct of metabolism and this can cause paresthesias in the skin.

I'd try some ice packs on the wrists to see if you have nerve entrapment there. This works quickly for carpal tunnel type symptoms, which palm pain may be a part of. When severe this pain can go up the arms. (it did for me when I had it during my pregnancy). If so getting tested for thyroid issues, would be a good idea.

You have something going on that flares. My first bet is on some organism, given that elevated IgM.

Many thanks for everyone's feedback, and I will try to answer your questions.


1) My mistake ... I am taking "Triamterene - HCTZ" 37.5 - 25 mg





2) I have a life-long history of sinus problems which led to four sinus surgeries. The first two overresected my nasal turbinates leading to chronic sinus infections. I then took numerous antibiotics over the years without taking the necessary probiotics because I was never made aware of them.

Incidently, I did take one low dose of Cipro (I think it was 500 mg once or twice a day) for a week or so about two years before my cranial neuropathy began (I believe I took it in 2003). That would have also been about three or so years before my body-wide neuropathies began.

I may have also taken an identical week of Cipro in the 1990s as well, but I am not sure. Nowadays I rarely use antibiotics, and when I do they tend to be Ceftin or Augmentin.






3) I developed "Irritable Bowel Syndrome in July, 1999 which roughly lasted until 2003, which I began taking Culturelle's Lactobacillus GG. That would suggest I had finally developed a yeast overgrowth by the late 1990s.






4) Yes, I was tested for H. Pylori in 2006 which was negative.






5) Multiple nerve conduction studies showed little if any slowing of the nerve velocity across my wrists. If I have Carpital Tunnel then it is very minimal.




6) My Thyroid is relatively normal. My last TSH was .90, and my Free T-3 and T-4 are also normal. However, I also take a low dose (30 mg) of Armour Thyroid daily.





7) I am intrigued by the Benfotiamine. What would be a good trial dose to see if it helps the Small-Fiber, and when should I expect to see results if they are to occur?




David

Hi Glen!


What are the various "multiple factors" that you feel are contributing to my neuropathy (I would assume that you feel my "IGG Paraprotein" is one)?

Keep in mind that I show no signs of demyelination based on multiple nerve conduction and EMG studies.

Thanks!

David

For the benfotiamine, I'd start at 300mg a day for a month or two. See if there is any change. Thiamine has historically been used for PN, so this improved form is worth a try. I use Doctor's Best from iherb.com

Thiamine is a cofactor in dehydrogenase enzymes that metabolize alcohols and aldehydes in the body.

Also I'd try and watch for triggers for those flares. Foods, stresses, some activity you do, sports, chemicals from hobbies, visits from an exterminator, etc.

--can also damage the axons--the actual nerve shafts--in addition to causing problems with the myelin sheathings.

What exactly were your nerve conductin study results? (Totally normal?) Was any testing for problems with small-fiber nerves (which cannot be appercepted by nerve conduction studies) done (such as skin biopsies for intraepidermal nerve fiber density, autonomic teatins, quantitative sensory testing)?

Hi Glen:


I began having serial skin biopsies down by "Therapath" beginning in the spring of 2008, which is when the formal diognosis of Small Fiber neuropathy was made. Between my first biopsy in March, 2008, and my return to Atlanta in November, 2009, I had a total of three biopsies.

As you know, they check the distal count by taking a skin sample from the calf, and the proximal using a skin sample from the top of the thigh. Abnormal values for the distal (calf) are counts below 5.4, and abnormal values for the proximal (top of thigh) are below 6.8.

My biopsies were as follows:




2/28/2008 ...... Calf: 4.13 ..... Thigh: 10.94


12/4/2008 ...... Calf: 4.04 ..... Thigh: 8.20


11/16/2009 ...... Calf: 4.50 ..... Thigh: 6.83





I went into a sudden and unexpected remission of my small-fiber symptoms on August 1, 2009, which may correlate with the reversal and improvement of my distal calf fiber count that you see several months later in November, 2009.

My remission then lasted for about six months, until another flair-up in February, 2010 when I was under a lot of stress.

Regarding my nerve conduction tests, they started out essentially normal in February, 2008. Suprisingly, it was noted that during a repeat conduction study nine months later in October, 2008, my sural sensory nerve action potential amplitudes had actually increased by 20% over my initial normal baseline reading of February, 2008.

Thoughts?

Thank you!

David