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Old 01-21-2012, 11:44 PM #1
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Default Degenerative Neuropathy

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.
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Old 01-22-2012, 07:38 AM #2
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Default There are many neuropathies--

--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?)
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Old 01-22-2012, 07:56 AM #3
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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.
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Old 01-22-2012, 02:53 PM #4
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Default

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.
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Old 01-22-2012, 03:26 PM #5
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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.
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Old 01-23-2012, 07:37 AM #6
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Default The blood testing you've listed--

--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
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