Hello,

I'm so impressed with all the kindness and cleverness I see here on this forum, it really gives me hope for humanity.

I've had small fiber neuropathy for about 2.5 years. It began with my ankles and feet in August of 2009 and then progressed to my hands a year later, at which point I went to Cleveland Clinic, was diagnosed, and prescribed Pamelor (generic name for neurtriptyline). That worked perfectly for about six months, but then my shoulders began to hurt after they were strained. They very gradually recuperated, not reaching normal shape but improving, until this December, at which point I again set them back and my knees started to hurt for nothing. Now, my mid arm area is beginning to hurt. Neither neurtriptyline nor anti inflammatories nor cymbalta help with the pain, and it all hurts worse when I use any part of my body (ankles, knees, shoulders, mid arms, hands).

Since the neuropathy started, I've healed much more slowly than before from small cuts and things like that, and I worry it also retards my muscle growth. Alternatively, I fear an underlying condition that would move in that order of progression, bouncing around and hurting all my extremities. Any ideas? I've generally eaten lots of sugar in the past, but also always gotten enough vegetables and fruits, and I've tried months of elimination diets, and nothing has helped. I'm really scared about worsening, and I've done many of the general things on this board (vitamins B, D, C). Does anyone recognize the degenerative process I've gone through, or have advice on more things to try using to diagnose or treat my pain?

Thanks.

--that progress slowly and have more global effects over time, but these usually involve more than just the small fibers that subsume the sensations of pain and temperature.

A lot of the neuropathies that have metabolic, autoimmune, or toxic origins will progress if the cause is not discovered and treated, and they can involve the larger nerve fibers in time, so that one will begin to get more sensory symptoms and even some motor symptoms. These are often referred to as "sensorimotor" neuropathies, which indicates that the sensory symptoms are dominant but there may be some motor symptoms as well.

What kind of work-up have you had to ascertain cause? (Have you seen the Liz Jane spreadsheets for testing for neuropathic conditions--www.lizajane.org?)

One other thing--many small fiber neuopathies can involve autonomic symptoms, as most autonomic nerves, especially to the skin, are of the small fiber variety. This often takes the form of temperature regulation difficulties, sweating/blood pressure disturbances, and slower healing--there are often troubles with optimal functioning of the smaller blood vessels.

I must admit, from your initial description, this sounds like autoimmune and metabolic (particularly impaired glucose tolerance) issues should be strongly investigated. (It's absolutely possible to get neuropathies before progression to frank diabetes. Have you had a long--4-5 hour--glucose tolerance test with insulin levels drawn simultaneously done? Advanced antibody testing to components of peripheral nerve?)

Welcome to NeuroTalk.

It would be helpful if you can tell us more about yourself.
How old you are, what other issues you have, what drugs you take or have taken recently, what vaccines you receive,
what your hobbies are, what you do for a living, etc., smoking/drinking.

Some deterioration occurs with aging. Sarcopenia, which is loss of muscle happens to everyone during aging. Males who do not eat enough protein, or who take acid blocking drugs regularly, cannot digest protein well. Lower protein leads to lower blood carrier proteins, which are essential for testosterone and thyroid hormone functions. So a simple thing leads to deterioration! Loss of strength, loss of stamina and loss of muscle strength. So it is not only nerves.

Do you know your most recent A1C level? Your fasting glucose?
Slow healing can reflect sugar problems. It can also reflect poor intake of essential fatty acids (Omega-3's) which repair the skin.
Zinc also is involved with repair along with protein.

I'd get the glucose testing, the A1C, B12 and Vit D, for starters.
You can request a fasting INSULIN, which if elevated points to insulin resistance.
There are specific supplements to help with glucose issues, so you need to be tested to see if they are warranted.

Some people do develop aches and pains, which may reflect, low magnesium levels, or some inflammatory process. If you take statins for cholesterol, look to them particularly.

So I am looking forward for more details.

I'm so amazed at how kind this community is. I really appreciate it.

I don't think I've had a 4-5 hour test of any kind, although Cleveland Clinic did the most thorough workup they knew of, and they have me marked as negative for Diabetes. Would the 4-5 hour mean me spending 4-5 hours having it taken? Because if so, I definitely haven't had it.

I also don't know anything about my glucose level, the doctors always just said that neuropathies accompany developed diabetes.

I don't know about advanced antibody testing, unless it's something that Cleveland Clinic did. Below are my tests listed:


UA CHEMSTRIP ONLY
12/1/2011 CBC + PLT R
12/1/2011 COMP METABOLIC PANEL
12/1/2011 SED RATE
12/1/2011 C-REACTIVE PROTEIN (CRP)
12/1/2011 ANA PANEL BLOOD SCRN
12/1/2011 ANTI ENA ID
12/1/2011 DNA AB DS + CONF BLD
12/1/2011 HEP REMOTE PANEL BL
12/1/2011 CCP ANTIBODY IGG


Of the below tests, only the ANA test was positive, and the doctors told me that that doesn't indicate anything in and of itself without other positives in Autoimmune tests, and that a fairly significant portion of the population has it positive.

I'm 22. I've always loved sweets and roughhousing, and lots of exercise. I've been a student until this semester, and I'm currently teaching abroad, though I'll have to leave soon because the winter pain is terrible on my neuropathy.

No smoking or drinking. I'm currently taking lots of fish oil, I've been taking D3 for some time, I use melatonin with 500% dv B6 to go to sleep at night, and I've always gotten too much protein. Zinc and magnesium have never been something I've thought about until I just found this website. Some anti inflammatory shots into my terrible shoulders helped the pain a while back in December, but I'm honestly not sure what was up. Normal anti inflammatory pills don't help.

I'm taking neurtriptyline (pamelor) for the sfn, and it helps my hands and wrists a lot. The feet/ankles and now also shoulders and knees continue to hurt. Like I said, I've had dramatic variations in diet for sustained periods of time trying to get to the bottom of this.

I really appreciate the help. Bless you.

Young people in your age group do get type II diabetes today.

It would depend on your weight, and food intake previously.
(lots of sugar for example, or heredity)

Obviously the CC doesn't keep up:
http://neurotalk.psychcentral.com/thread158275.html

They are not looking for prediabetic conditions in your age group, obviously, when other places do have young people developing type II.

At your age, I'd look at vaccine history. Do you get vaccines?
did you get them recently?

Do you take acid blocking drugs? Have you been exposed to toxins? In chem lab?

If you take fish oil, then you need magnesium. Magnesium is a cofactor in utilizing fats properly. You can buy topical forms and rub it on, which might be easiest for you.
Some CVS pharmacies still have the Epsom lotion (they are discontinuing it I guess because of slow customer response). My store still has it, for example. Another topical is called Epsom-It...and is still available online. Or you can take magnesium supplements-- any type except for OXIDE ..which is not absorbed and stays in the bowel.

Magnesium helps to relax muscles etc, when they are tight or stiff.

It is unusual for a young male to have autoimmune disease, but it is possible.

If you are working out, lifting weights, or some such, I'd give that up for a while. See if things improve. If you carry a heavy back pack around all day, or sit for long periods at a computer, shoulder issues can happen with poor posture. Small strains can happen when you overdo things. With spotty food intake or other "burning the candle at both ends" young people often get into difficulties which can be reversed with easy interventions.

If you went overseas? Did you get vaccines for that? Did you eat strange indigenous foods? Some parasites cause hard to diagnose symptoms.

--is very much tip of the iceberg, and very standard.

Were there any others?

Yes, the extended glucose tolerance test with insulin draws takes 4-5 hours to do. A fasting glucose/insulin level is drawn, you drink the glucose solution, and then get draws at .5, 1, 1.5, 2, 2.5 3, 4, and sometimes even at 5 hours. One does have to say sedentary during this--physical activity skews the results. (I always bring books and a full iPod.)

The idea is to look at the patterns of raising/lowering insulin and glucose readings, which are often more revealing than looking at either alone. One can sometimes determine if there is pre-diabetic insulin resistance, or overproduction of insulin to keep glucose levels normal post-drink, which can then lead to reactive hypoglycemia. Both of these are forerunners to impaired glucose tolerance.

One would think the Cleveland Clinic would go further with serological testing if nothing interesting showed up in that first round, and include some of these:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Wow, that is all so good to know. I'll pursue extended glucose testing.

As for other questions...
I've always had the right vaccines before going abroad, which I've done many times, but I didn't go anywhere shortly before my condition developed.

So is an epsom salt bath a good approach? Should I try taking magnesium/calcium supplements?

I don't take acid reducers, and I've never been particularly exposed to anything.

I don't work out anymore, my shoulders are in too much pain and the pain increases far too easily.

Mrsd, I saw the thread you wrote, and it looks fascinating. What things from that thread would you specifically advise I talk to my doctor about/try? Particularly in terms of what drugs/supplements to take? Also, there was another sticky thread about eventual healing that alluded to a program of drugs and/or supplements on page two of the stickies on this forum, and I've spent hours but still can't understand what that means. Could someone link me to that? It's stressful and terrifying to learn all the ins and outs of my condition, but I can tell people here have found important things to do, and I want to learn them.

Thanks again, all.

Hmmmm..... so you have had LOTS of vaccines over the years?

Which ones? Can you list them here?

Vaccines are one trigger for PN, and autoimmune disease.
http://www.whale.to/a/neuropathy.html
Today vaccines contain substances that are called adjuvants, these stimulate the immune system, and in some people this becomes excessive and damaging. Vaccines can also have contaminants in them. One of the most dramatic forms of neuropathy is Guillain–Barré syndrome. But many less acute forms exist as long term issues for people who inherit the over-reactive immune system. Many doctors will not broach vaccine injury as a cause, because they don't want to get involved. Large clinics in general have "beliefs" and the doctors who work there all follow the rules. Example of Mayo and its hesitation to use narcotic pain management.
One vaccine that was hugely damaging was the Lyme vaccine.
When enough people present all at once like for the Lyme vaccine it is more obvious. But the process of this damage remains a potential for anyone receiving vaccines today. I will have a link explaining surface antigens in the recipient of vaccines...soon. This was the problem with Lyme vaccine and Hep B. The Lyme vaccine caused degenerative arthritis in certain people who genetically had certain markers in their blood.

Neuropathy does Improve...sticky thread:
http://neurotalk.psychcentral.com/thread43699.html

This is long and you have to watch it all to find what you want/need for complete understanding.

This is our subforum:
http://neurotalk.psychcentral.com/forum119.html

I am gathering information for a vaccine thread on the subforum in the next few days.
Here are some links that will be on it for you to consider now:

http://www.youtube.com/watch?v=--nWrqIspnQ
parts 2, 3, and 4, are on there too. I suggest you watch them all.

One doctor's opinion on why doctors don't understand vaccine injury:
http://www.youtube.com/watch?v=R_3_N...eature=related
The doctor on this YouTube is quite emotional about this subject, and ventures a comment on nurses giving invasive vaccines and the doctors not even being present! I'd add now that people today go to
pharmacies for vaccines..a common advertisement of chain drug stores to make more money....and these people NEVER see a doctor or NURSE. They walk out the door, and that's it.

As for the elevated ANA being benign? I don't agree. I think it is the beginning of something long term for you. There are people here who had significant problems with normal ANA and didn't get positive results until later. ANA can test pos/neg and go back and forth. In someone with symptoms, it should be monitored regularly.
http://www.uptodate.com/contents/pat...antibodies-ana

and:
http://labtestsonline.org/understand...s/ana/tab/test

Ok, I'm still a little frustrated. On the "Neuropathy does improve" thread, the first several posts refer to some strategy on "page 3 of the stickies" which I see later on was amended to page 2, and another person says that the key is to feed the mitochondria. I have no idea where page 2 of the stickies is, since there are four stickies with lots of pages, and I don't understand the technical abbreviations for the supplements to take. Could you direct me with a link to the "page 2 of the stickies" or some comparable resource for what kinds of things I can take that might help my body balance out some of the symptoms?

Help would be appreciated. I know I have to figure out why I have the neuropathy, and I have some ideas in that direction, but I'd like to feel like my body can restore some. Thanks.

The Neuropathy does improve thread is a sticky....it has many pages.(it was not always a sticky in the beginning, but became so later)

Post 19 in that thread offers a list from that poster that worked for HER.

http://neurotalk.psychcentral.com/post260853-19.html

This post on the Useful Websites sticky is another:
http://neurotalk.psychcentral.com/post9580-18.html
and part 2
http://neurotalk.psychcentral.com/post9583-19.html

Each of us has their own list of things that works best for THEM.
Everyone is different because there are different genetic things going on in each person, and their diet is different, and exposure to toxins is different.

At your young age, having a degenerative condition is not common unless genetic (you can have DNA testing to see if you have CMT --Charcot Marie Tooth disease) or you have beginning arthritis or a rheumatological problem.

Seeing a Rheumatologist may be helpful for you. Take all your test results in to him/her for evaluation.