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

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

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

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:
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.

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

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

When muscle mass is affected, in a person who exercises...
one has to wonder about damage to the axons.

Sensory neuropathies sometimes do not spread to include
the axons. When axons are affected, it suggests an autoimmune event (including reactions to vaccines), a toxin, or
a hereditary neuropathy which is inescapable.

Because something was "checked" does not mean it was interpreted correctly. A level of 250 for B12 in the US will not
be flagged for a doctor to notice. And many do not even know about the new 400pg/ml level that is 10 yrs old now.

Many doctors miss this. That is why I am here.

There can be antibodies to the myelin coat of the axons. Or as Marlene has stated, the cell itself is attacked, and mitochondria damaged. Mitochondria provide the energy for the cell to live and do its job.

A skin biopsy can show if you have sensory loss of neurons and is quite benign compared to that old sural biopsy.

Since you drink often, you could try Thiamine B1 300mg daily in divided doses, or its improved form Benfotiamine 300mg daily (don't need to divide the dose), for 3 months and see if there is any change. Thiamine is a cofactor in the metabolism of alcohol, and when low, or used up, the aldehydes may accumulate and damage nerves. Both of these are OTC.
Thiamine in most drug stores, inexpensive. Benfotiamine is mostly online. I use Doctor's Best, as it is a quality company and affordable. iherb.com and Amazon and some other discount online suppliers have it now.

One of the best things for maintaining muscle mass with aging
is whey protein. It has shown in studies to reduce sarcopenia, in aging adults.

Also since you are on a DAILY diuretic, you are losing magnesium in a big way from that. Taking a quality (not oxide) magnesium chelate will help replace that.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Having adequate Vit D levels also helps with magnesium absorption. (as well as with calcium).

I have held back from this discussion because what I have to say is not very encouraging, but it is based on experience. I have CMT, hereditary neuropathy, primarily axonal. The muscles in both feet, ankles, and lower legs are visibly atrophied, but it is more noticeable on the left. I am unable to move my two middle toes at all, and have limited range of motion in my other toes, feet and ankles. It is progressive. It is always progressive, though no one can predict the rate of progression. I am 51. It started with clumsiness and walking funny as a child, numbness in my toes in my 30's, and has progressed to numbness above the knees with complete sensory loss, balance affect, and muscle weakness.

If you have visible muscle atrophy, I would think that this is your most likely cause. You cannot regain lost muscle due to this disease. The best that you can do is exercise as tolerated to strengthen other muscles to delay further disability. I walk every day possible, often for miles, but on mostly level ground. Even slight inclines are exhausting and dangerous due to weakness. I use two hiking poles when outside. I enjoy it, but it leaves me too tired to do much else.

A skin biopsy showed severe small fiber neuropathy. My EMG/ NCS showed large fiber neuropathy with muscle loss. I have a fair amount of pain which is controlled with medication.

Susanne.