[Riverwatcher]

Hello all

New member here, appreciate all of the help and insights from members of this forum, thank you very much.

After seeing 3 neurologists and 1 rheumatologist, given copious amounts of blood and 2 EMG's, I've been diagnosed with moderate to severe idiopathic PN. It has progressed aggressively and I'm seeing strength loss in the muscles in my ankles, feet, lower legs, hands and forearms. I've been physically active all my life, (current age 56) get to the gym regularly for moderate weight training and stretch daily. I have experienced chronic muscle and joint aches and pains which are alleviated by stretching and working out. I've recently noticed that my lower right leg muscles are noticeably smaller in size than my left leg.

My understanding is that strength loss can one with PN, the question that I have is what if anything can be done to offset this, or slow the progression?

I enjoy about 2 to 3 ounces of scotch daily and it has been suggested by one neurologist that I give this up and to also begin a gluten free diet. I've tried this for awhile without seeing immediate payback - just wondering if anyone else has similar situation and has seen positive results from any actions taken.

thanks much!
River

[mrsD]

Welcome to NeuroTalk.

Have you had autoimmune testing? Testing for antibodies against the nerve tissue? Testing for MGUS?

Loss of muscle function and nerve function can be hereditary (Charcot Marie Tooth),which has no treatment, or CIDP, which is treated with IVIG treatments if autoimmune tests positive.

Have you had B12 tests? Do you know the actual number of the result? Doctors call very low levels normal still, and it has been about a decade that the new low is 400pg/ml in US.

There are medications that can cause neuropathies. Statins for cholesterol, and certain antibiotics, and other ones.

Here is a list:
http://neurotalk.psychcentral.com/thread122889.html

[Riverwatcher]

Hi Mrs D

Thanks for the quick response! I've had testing for autoimmune and for antibodies. All negative with the exception of one marginal result for cryoglobulins. Not sure about the MGUS, will go back thru my records.

It's been suggested that I have a nerve biopsy to determine the potential for vasculitis, this is based on the marginal test result regarding the cryoglobulins. I have opted not to do the biopsy until further tests indicate the need, the biopsy I'm told will leave permanent numbess in the back of my leg and heel.

Have been tested for B12, ok. Only med I'm taking at for high blood pressure.

I've seen 2 neuromuscular specialists at the Cleveland clinic so I'm thinking that the low hanging fruit options for possible diagnosis are ruled out.

Looking now to become more active in my own personal choices and behavior which might help the situation. Just read posts from Wing42 on " A program to heal nerve damage and reduce PN symptoms". Looks to be very helpful.

River

[mrsD]

That sural nerve biopsy can leave you with permanent PAIN...
as well the numbness.

The conduction tests should show if you have axonal problems.
The sural biopsy is rather redundant and not done much anymore.

What blood pressure drug do you take? Some can cause
drug induced lupus, or other reactions. I am recovering from this from my ACE inhibitor.
This link gives drug induced lupus triggers. This condition does NOT raise ANA values, and can go undetected, by common testing.
http://www.lupus.org/webmodules/weba...=377&zoneid=17

Never underestimate your medications. Doctor still do, but you should not. And I am lucky I figured out my own problem, when I did. It was agony.

Some people who take beta blockers develop a myopathy.
Here is a paper on this:

Baillieres Clin Rheumatol. 1991 Apr;5(1):21-38.
Drug-induced myopathies.
Le Quintrec JS, Le Quintrec JL.
Abstract

Myopathies are not an unusual complication of drug therapy. The major symptoms in drug-induced myopathies are proximal muscle weakness, increased muscle enzyme levels, electromyographic changes and histological lesions. Some drug-induced myopathies are associated with neuropathy. Drug-induced myopathies can be classified according to the presence or absence of muscular pain and associated neuropathy. Among painless myopathies, we can distinguish myopathies without neuropathy (corticosteroids), myopathies with neuropathy (colchicine, chloroquine and hydroxychloroquine) and myasthenic syndromes (D-penicillamine, antibiotics, beta-blockers). Among painful myopathies, the classification is similar: painful myopathies may or may not be associated with neuropathies. Painful myopathies include polymyositis (D-penicillamine, cimetidine, zidovudine) and other myopathies without polymyositis (clofibrate, statines, cyclosporin). Among the painful neuromyopathies, eosinophilia-myalgia syndrome is a recently described disorder associated with the use of L-tryptophan. Combinations of drugs (for example, a fibrate and a statine or cyclosporin and colchicine) can induce severe myopathies. If such drugs are used together a vigorous surveillance to detect any sign of myopathy is warranted. Instead of classifying drug-induced myopathies according to clinical features, a histological classification can be proposed. Many drugs can induce vacuolar myopathy (colchicine, chloroquine, amiodarone, cyclosporin, drugs causing hypokalaemia and lipid-lowering agents), some others cause a mitochondrial myopathy (zidovudine) or a necrotizing myopathy as seen with vincristine. Overall, several criteria for reporting drug-induced myopathy can be recommended: lack of pre-existent muscular symptoms, a free period between the beginning of the treatment and the appearance of symptoms, lack of another cause accounting for the myopathy, and complete or incomplete resolution after withdrawal of the treatment. Rechallenge of the treatment is not advisable because of the risk of a serious relapse. The exact mechanisms by which drugs cause myopathies are unknown. Some cases may be due to metabolic changes, whereas others may be immune mediated. Nevertheless, the aspect these conditions have in common is the regression of the myopathy with the discontinuation of the drug.

PMID:
2070426
[PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/2070426

You need your B12 numbers because lab ranges in US go down to 200, which is low enough for damage to occur. This is not flagged by labs, still today, so you may be low and not know it.
This is very important. And we see it here frequently.

Cryoglobulinemia:
http://en.wikipedia.org/wiki/Cryoglobulinemia
When the blood cannot flow into the little blood vessels in the tissues, the nerves may starve and die.
You might want to soak in warm water with magnesium, in the form of epsom salts. This will open up your blood vessels and improve tissue perfusion. Don't use really HOT water, as that may sting your skin. See if this helps. If so using a good magnesium product that is absorbed well, orally, will help further. Some natural VitE is also helpful for poor circulation.
At least 400IU a day. Fish oil or Krill oil is very good too. So please consider those.

[Marlene]

Hi River,

Have you have had your hormone levels checked? Mitochondrial support should also be explored. There have been quite a few threads on it so do a search on it.

My husband's muscle weakness was greatly helped by improving the status of both.

Marlene

[Riverwatcher]

Thanks again Mrs D and also to you Marlene. I'm traveling and away from my files, will check the B12 and hormone info when I get back and let you know. My belief is that these have both been checked.

HBP meds are losartan potassium HCTZ, will review your suggested link.

My real interest in this thread is to find out more about the potential for exercise to help reduce / slow the impact of the muscle strength loss and balance issues that I'm experiencing. If I ultimately have idiopathic PN then I'm looking for ways to make the most of it.

Have a great day!

River

[Mr & Mrs Peyo]

Originally Posted by Riverwatcher

Hello all

New member here, appreciate all of the help and insights from members of this forum, thank you very much.

After seeing 3 neurologists and 1 rheumatologist, given copious amounts of blood and 2 EMG's, I've been diagnosed with moderate to severe idiopathic PN. It has progressed aggressively and I'm seeing strength loss in the muscles in my ankles, feet, lower legs, hands and forearms. I've been physically active all my life, (current age 56) get to the gym regularly for moderate weight training and stretch daily. I have experienced chronic muscle and joint aches and pains which are alleviated by stretching and working out. I've recently noticed that my lower right leg muscles are noticeably smaller in size than my left leg.

My understanding is that strength loss can one with PN, the question that I have is what if anything can be done to offset this, or slow the progression?

I enjoy about 2 to 3 ounces of scotch daily and it has been suggested by one neurologist that I give this up and to also begin a gluten free diet. I've tried this for awhile without seeing immediate payback - just wondering if anyone else has similar situation and has seen positive results from any actions taken.

thanks much!
River

Hi River- I suggest a simple blood test for familial amyloidosis. My husband had similar symptoms, and found out this is what he had. It is extremely under diagnosed, because it has so many symptoms that can be attributed to other diseases. He was tested for everything from lyme disease to ALS. After some detailed family history information an extremely bright neurologist suggested he had TTR-FAP. Good luck I hope you find comfort.