Dealing with muscle weakness?
 

I've been dealing with PN for about a year with gabapentin succesfully most of the burning sensations for the last 4 months or so. I'm still currently labeled "idopathic", but I'm seeing my neuro on Monday with results of my latest tests.

It's been steadily progressing and in the last month, it's progressed into my hands along with muscle weakness -- most notable in arms and shoulders.

Has anyone found anything that can help deal with the muscle weakness and associated fatigue?

Thanks,

Ed

I think you need
 

to ask your doctor.

Most (but not all) PNs are sensory. Once they become motor,
you need more aggressive medical advice.

Plasmapharesis is sometimes used to treat motor issues, if immune complexes are the cause.

Your weakness could also be a manifestation of type II diabetes. Muscle weakness is one symptom of increasing insulin resistance. Also your neck should be evaluated for any stenosis there.
Hereditary neuropathies may also affect motor functions.

Muscle wasting and exercise
 

This is a area of interest for me too. I've only recently become aware of aching (muscle wasting ?) in my thigh area and am naturally anxious about it spreading or worsening.

I suppose I could get referred to an OT and perhaps I should. I don't swim, but do a reasonable amount of walking, mile a day average, up to 3-4 weekends. I haven't cycled for a long time but am pondering trying this or even an exercise bike, but don't want to do more harm than good !

Has anyone got any experience or advice they can share please ?

My PN is diagnosed as alcohol related - I've stopped completely - so hope things won't get worse.

Thanks for your feedback...
 

Very interesting feedback for a couple reasons:

1. Although my glucose levels and A1c numbers have been normal, I just had a 2-hour glucose intolerance test done since I read about a number of cases where they had "normal" numbers for their everyday tests, but failed a later glucose tolerance test. I find out the results on Monday with my next visit to my neuro. In a strange way, I'm hoping I've failed and can be labeled "pre-diabetic" so that I have something definitive to work on.

2. Your "neck stenosis" suggestion is, again, spot on. Even before the muscle weakness became more noticeable, my neuro and I were talking about getting an MRI done of my neck because.... 5 years ago, I had two discs removed in my neck. During the surgery, he did a lot of a lot of clean-up of arthritis. Based on what I'm experiencing now, if I didn't have the PN feelings in my feet/legs first, I would be immediately guessing that I'm having another issue with my neck.

Keep the suggestions coming.

Ed

Re: Muscle weakness
 

I have been finally diagnose correctly a couple months ago from MS to PN. Yahoo! or not. All the glucose and blood work, skin biopsy come back normal. 2005 a spinal tap came back above normal protein level. Anyway, I to am on gabapentin. Found it had nothing to do with the muscle weakness in my arms and legs. Its frustrating..even folding laundry is a chore. I cannot stand for periods of time in one spot and my balance..well lets say I hope I never get pulled over for a DUI check...I totally fail on balance.

So this wll be a strong issue on next Neuro Dr. appt. The Gab stopped the burning to but everyday pain is an issue. I will take an oxcodine or a vicodin if really hurting and it helps.

I wish I could wave a magic wand and make all of feel better.... Best regards

Ed, you can have a fasting INSULIN run. It is easier than the GTT. Elevated levels indicate you are insulin resistant.

In some ways this is a more valuable test as it does not require so much interpretation.

My results are in. "Unfortunately", I'm not pre-diabetic...
 

My glucose tolerance test was quite normal. My blood sugar levels were well back to normal (80's) in short order after drinking the glucose.

Neck MRI is next, but I'm starting to run out of options and am dangerously approaching permanent joining the "idopathic" camp.

Ed

Ed, when insulin levels are going up on a daily basis, you clear sugar quickly for a while. Then all of a sudden the system fails, and the sugars go up.
Your test does not show elevated sugars YET, but your insulin levels may be high already....and this is what you need to know. Interpretation of GTT can be pretty fuzzy...or outdated.

This link may be helpful for you:
http://lightning.prohosting.com/~hyp...20Hypoglycemia

Many people show reactive hypoglycemia as a prelude to real diabetes.

Ed,

I also have problems with weakness and fatigue. I take Neurontin too. I've heard Neurontin can cause fatigue, but so can PN. Maybe adjusting your dose would help? Also, I know there are several meds available for fatigue..Provigil and Amantadine (older med).

I had luck with an Occupational therapist. She showed me different ways of doing things that conserved energy. I also had some exercises to help strengthen my muscles.

Good luck.

I appreciate your continued dialog on this.

I was not checked for insulin levels, only glucose levels.

If I was hypoglycemic, to some degree, what would the treatment be to prevent it from turning into full diabetes? Would it basically be a lifestyle change -- exercise, avoid high carb foods, etc?

Unfortunately, my test was only 2 hour (and ended at 83) so it doesn't show if there could have been a possible upward swing a bit later. It's probably going to be hard to convince my doctors and my insurance company to repeat the test for 5 hours.

There
 

are some metabolic doctors who believe that most if not all
people become somewhat insulin resistant after 40.

The degree of this depends on genetics.

I suspect Ed, that you are beginning to get this.
And when that happens, there are small signs.
One of which is that muscles do not receive enough to run on.

Now besides glucose there are fatty acids that the mitochondria can consume for energy. They can be enabled by acetyl carnitine, lipoic acid and biotin. Some people add CoQ-10 to that.

Dr. Ames, a noted biochemist, believes as we age we lose this ability, all of us. Some more than others, to have good energy derived from our mitochondria, the energy parts of our cells.

Yes, diet and some supplements may help. Smaller meals, with more protein and good fats with lower glycemic carbs. But if you have the diabetic genes this is only partially effective.
Some small quality snacks in between help too.

Make the changes slowly. It is easier that way to make new habits. Check out Dr. Sears' Zone plan, on line. He has had very good success with Metabolic syndrome.

There are some things in our environment that are worrisome.
One is the plastic Bisphenol A. It has been implicated in causing weight gain and hence type II diabetes. Another new issue is the lack of sleep people have. Melatonin loss has recently been shown to affect the pancreas.
You can read about that here:
http://neurotalk.psychcentral.com/thread68433.html

Your muscle weakness may be due to something else, but it could also be a sign of poor glycemic control.
Many doctors don't recognize early signs. So that it is up to the patient to do so. Back in the 70's there was a diagnosis of "hypoglycemia" that was a fad. The Schering corp even made a drug for it called ProGlycem...which was a terrible failure.
Millions were diagnosed with it. And in the end...where did that diagnosis go? We now call it pre-diabetes, metabolic syndrome, etc.

I have been fighting this fight for 20 yrs. And even now, I seem to be losing it. Diabetes is in my maternal side, each generation, and I guess I am doomed eventually. But I have controlled it this long. My mother was less than 40 when it started for her.

We all do what we can do with what we have.

Another thing for males.... historically speaking thyroid issues are less common in men. But that is changing fast. Some doctors do not test thyroid commonly in men until old age, or only if drastic symptoms are present. But flame retardants in the environment and our water, are implicated in causing hypothyroidism. So if you haven't had yours checked, please do so. That muscle weakness can come from either hyper or hypo
functioning of the thyroid. More and more men are now developing thyroid disease than ever before.

add pilates
 

to help your muscles. Yoga can be helpful too.
I found these 2 techniqes - very helpful for me.

muscle weakness
 

Ed, I have the exact same symptoms, I have this intermittant weakness in my legs and arms. I had my second neuro appt today, and he said I have mild sensory motor neuopathy. He feels its about my glucose levels.(because he cant come up with anything else) My neuro does not feel at this time to do any more tests. Did you ask your neuro about Charcot Marie tooth (CMT), or chronic inflammatory demylenating neuropathy( CIDP).He ruled those neuropathys out for me but , but what is your next step? Are you going to do any more tests. I also started the vitamins, the only advice he gave me with those was watch B6, too much can cause neuropathy. Well hope that helps. Lynn

Sensory to Motor?
 

Mrs D,

Do some Peripheral Neuropathies become Motor? Can that be seen on EMG?
Just curious.

Lynn

Lyn - my neuropathy has been sensori-motor from the get go, so it hasn't been a case of sensory progressing to motor. My motor issues definitely cause more problems for me than the sensory issues and are treated aggressively with limited success.

cheers

raglet

I think the hereditary ones
 

may be combined, and progress this way.

Also acute toxin poisoning will affect many nerves.

But the vast majority of PNs remain sensory.

For example poisoning with arsenic affects both systems.

But diabetic neuropathy typically does not. But some people with diabetes progress to autonomic and gastroparesis, when others do not.

So it might be a matter of overwhelming the systems suddenly,
or genetic failure of the nerve cells (something within them
fails and the cells die).

Neuropathies are very complicated. This is why we don't see more progress with their treatment by the medical community.
Each person presents with different symptoms and degree.

From what I have seen, the more aggressive treatments are offered (IVIG and plasmaphariesis) when motor elements become affected.

I know this is kinda an older post, but I haven't been on neuropathy boards in a long while.

I was diagnosed with a "sensory greater than motor" peripheral neuropathy this last summer.

I think sometime around Christmas I started noticing that I was depending on shopping carts to get me around the store.
And now I have increasing problems to the point that I can not go to the gym.

My Dr. said I probably have a "foot drop" which is muscle weakness of the ankle.

So now its back to neurology to me, and I am on Gabapentin to try to get some sensation back in my feet. (I don't have pain)

Hope that helped a bit?

i have never heard of gabapentin or lyrica,or any other drug getting sensation back in feet or elsewhere. Is that the reason your doctor prescribed it?

I agree... Neurontin and its cousin Lyrica do not restore anything.
They are for pain relief.

I would wonder if a vaccine triggered this?
Flu shot
Gardasil
Menactra (has a warning about GBS)
Hep B

I would explore autoimmune issues. Losing motor functions is alarming and should be investigated further.
Treatment for autoimmune is IVIG.

And I'd also explore the hereditary issue.
 

Even going to a specialty center is not a guarantee these tests--the ones that exist, anyway (there are probably a number of hereditary conditoins that involve neuropathy which have not yet been linked to anomalies in the genome)--will be performed. One has to be one's own advocate.

See:

http://neuromuscular.wustl.edu/time/hmsn.html

http://neuromuscular.wustl.edu/time/hsn.htm

HAha, I know, my Dr. is an oddball.
She said that the Gabapentin is mostly used for neuropathic pain, and that there was very little chance that it could do anything to bring sensation back to my feet so she didn't want to get my hopes up.
However, She did say that there was a long shot, and that it could be worth a try.

I oddly haven't had any "dead" feet since going on it. But it makes me want to eat like all the grocery stores in the world will be closed and I need to stock up.

i hope it works for you. do you have any inflammation? if so some antiinflammatories might help with numbness if it is being caused by the pressure of inflammation.

It does sound worth it to check out any neck problems with your arm weakness.

Basically i have never found anything that helps with weakness. I use a variety of orthotic devices, plus I walk with a walker and use a wheel chair at times. I go to the gym three times a week, so i know that i am as strong as i can possibly be, but I have never regained any strength that i have lost. I have recently lost most of the strength in my left quad muscles which is really difficult as it makes picking up my leg difficult. I can only lift it about one inch off the floor despite doing exercises to try and improve the strength.

oh well, nothing much i can do about it - i have motor involvement along with my neuropathy (sensorimotor axonal neuropathy).

cheers

raglet

Is it standard procedure for neurologists to dismiss/ignore complaints of weakness if it can't be clinically presented? My symptoms are primarily sensory and located in my feet. Evidently, vitamin deficiencies are implicated (both b12 and e). But I am also experiencing intermittent weakness in my left leg. It is relatively minor, but definitely noticeable for me. The neurologist I was seeing did not seem to concerned about it (the EMG and nerve conduction test showed nothing out of the ordinary in both arms and legs). I have plans to follow up with a neuro-muscular disorder specialist in a few weeks, I am hoping he might take the weakness more seriously.

Hanshan...
 

My answer would be yes, I've found it common for neurologists to downplay weakness if the EMG/NCS is normal. There is clinical weakness that is obvious, i.e foot drop or inability to raise an arm, and there is subclinical weakness, where you feel the difference but it isn't readily apparent to the doc.

EMG's are subjective to begin with and can change with time. I first had sensory long-fiber changes in my legs back in '05, now I have some muscle denervation from motor nerves in my left foot. With those changes I can still walk on my toes, balance on that leg have good big toe strength etc. Walking on the heels is harder.

With that, I am in a "wait and see" mode, which is also common with idiopathic PN. You just live each day to the best of your ability. A good neuro will keep an eye on the clinical changes.

Thank you! May I ask if your neuropathy issues are related to your lumbar problems? I have early stages of DDD at L5-S1. Woohoo!

Ready for a frustrating answer?
 

I don't know. My last neuro said probably not, the neurosurgeon said quite possibly yes. I am 8 mo. post fusion. I have had a decrease in my burning/squeezing pain in my left foot, but I have more numbness. I still have weakness in my last 2 toes. Symptoms on my left leg are much more than my right, leading me to think it is related to my back, but I may have PN and the back issue. A "double-crush" diagnosis, as it's been referred to here. I am left to wait it out, to see if things improve or decline.