muscle atrophy caused by peripheral neuropathy

[karen nichole]

Is anyone else out there suffering from muscle atrophy as a complication of pn? My hands are progressively getting worse, right greater than left hand and both feet affected equally. The thing I am really getting scared about is that the atrophy is just getting worse, mostly my hands. I just saw two friends I had not seen in about 3 weeks and they both noted the difference. I guess I had noticed it as well but didn't want to really see it. I have this overwhelming feeling of doom or something bad is about to happen. I feel if this continues I may very soon lose the ability to use my fingers or hands. I saw a hand therapist and she said keep moving but it is probably the disease process and I am probably fighting a losing battle. Is anyone else going through something similar? How are you handling this or what have you tried to stop the atrophy? Can it be stopped? Anyone???????????karen nichole

[noong]

Hi Karen Nichole,

I thought I'd put my oar in here.

I have CIDP with complications and have had for years. It's PN on a grand scale, so to speak.
At one point, many years ago, I broke some bones after a fall and because of weakness surrounding my condition and a couple of other factors, I was unable to exercise ENOUGH.

I ended up with atrophy to the point of being in a wheelchair and my quads were about the width of your thumb's fingernail.
Through intensive physiotherapy, months and months worth, I managed to slowly get back on my feet.
Fighting through the pain barriers and hypersensitivity that we feel is another challenge, but I tend to view it as just that...A challenge.

We lose muscle mass in the space of 12 hours and if it's let go....well....WHAM! It's something I'm sure all PNer's think about regularly and are conscious of.

You MUST keep moving.

Please don't be lulled into this sense of ,"oh it's the condition. Not much I can do" Because you may do yourself more harm than good.:(

I hope this helps :)

Happy hand exercises :D


Noong

[karen nichole]

Noong,
Thank you for all the info. I didn't know PN could cause this type of complication. The doctors have diagnosed me with PN in a round about sort of way. I get another MRI tomorrow to definately r/o MS. I am so tired of all the tests. I will keep moving. Can this muscle loss be reversed?...or just maintain what is lost? I know I sound weak, but I'm not. I'm just tired. Thanks for the information, I truly appreciate the advice. karen nichole

[noong]

Hi Karen Nichole,

My PN is caused by a condition known as Chronic Inflammatory Demyelinating Polyneuropathy which is like a chronic form of Guillain Barre.

It sounds as though you haven't had any sort of definitive diagnosis yet, so Try not to be too worried about what may happen.

If you're unsure or not particularly happy with what the doctors are testing for and doing, have a look at lizajane's stickie at the top of the page. You may find it helpful.

Depending on the condition, muscle mass can be fully rectified with work although I'm not sure about certain Neuromuscular conditions.

By the way, you do not sound weak at all. The testing phase is incredibly tiring and stressful on all of us. You aren't alone and you don't need to apologise for anything.....OK?

Please let us know how your MRI went and I'm sending a bunch of {{{{{{{{{{{{{{{{{{{{{{{{{{GOOD VIBES}}}}}}}}}}}}}}}}}}} all the way from OZ to you.


Noong

[dahlek]

Your body tells you to KEEP STILL! Your brain tells you to GET & KEEP MOVING! Why? Response to pain is to wait until it stops. When you have chronic pain if you STOP everything can deteriorate.

Noong is right - GET MOVING!

Now for the how's of it. Ask your doc for physical therapy, most docs just don't think of it as it's not strictly medical. I've never had my docs say no, as long as it's allowed by your insurance. The co-pays are a bit different usually tho.
It is IMPORTANT to ask for a program of therapy that gives you exercises you can do at home. That way, you will have a set of things to do for the areas you need to strengthen, and can build up your strength AND the ability to do them SAFELY!
I was first diagnosed w/severe PN then it was changed to CIDP & I have lost muscle tone in critical places mainly the feet ankles and wrists. If I fall down I can and have hurt myself getting up. I exercise, I can drive, I can walk w/o a cane...ONLY because of this therapy.
It never hurts to ask! Don't know about you, but the alternative is unacceptable! - Good thoughts and pain free moments - j

[karen nichole]

Noong & Dahlek,
I think the good vibes were felt. The MRI was normal. I am happy and sad. I just want a definate diagnosis. How did you both get the CIDP diagnosis? I'm going to look it up once I get done posting but what's the difference? How do you know to keep looking? How are you, I don't want to say satisfied because I know your probably not, but sure that this is the right diagnosis? I am seeing some of the top doctors at Barnes Hospital in Saint Louis, Mo and they can't figure out why or for sure diagnosis. I've been declined by Mayo Clinic twice because and I quote, "We just don't know what else we could offer you that Barnes hasn't already tested for"...Where do you go from that kind of response TWICE. I spoke with my internest and he wants me to attemp to other hospitals outside the area. I'm thinking if Barnes can't help me I would be worried at where else to go. Is CIDP hard to diagnose or did you have to wait for along time to get this diagnosis?karen nichole

[HeyJoe]

There is a peripheral neuropathy center in Chicago called the Jack Miller Center for Peripheral Neuropathy at the University of Chicago.

[curiousforever]

I know what you're going thru. MY hands are getting really weak. It's bad when my 6 yr old can pin me down and I can't get up!

I also have a round about PN diagnosis. They cut my pain meds - and now I'm unable to deal with the pain with exercising...they are going to "adjust" them they say - but I switched from one to another....

But I *was* exercising...

[glenntaj]

--Washington University in St. Louis has one of the best neuromuscular centers around.

Take a look at this, which is from the university's own neuromuscular website (and a great database of neural conditions):

http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidp

[karen nichole]

Thanks for all the info from everyone. Actually I am being treated by the Barnes/washington University facility. Dr alan Pestronk is my doctor and he is really good. He just doesn't know why this is happening. I did talk to his fellow today and they have tested for CIDP -negative. I'm going to see them on Tuesday after my infusion and they will measure the changes. He mentioned adding plasma pheresis or chemo type drugs. I can't wait until my treatment is found.karen nichole

[HeyJoe]

Have you had a lumbar puncture aka spinal tap to check for autoimmune causes?

[noong]

Hi again Karen Nichole,

It sounds as though your doctors are onto it. Some Neuro disorders are notoriously hard to dx, and it can sometimes take a while.

I hope that they manage to get something definitive soon.

Still sending those good vibes

Noong

[mrsdoubtfyre]

I have some suggestions for muscle building. It is really very important to supply amino acids (in the form of Whey protein), when you start.

http://www.usdec.org/files/Publications/SARCOPENIAmono3_8ew.pdf

While this is complex...it is the best article I have found on nutrition to
avoid muscle loss.

Miriam Nelson has a video out, your library may have it.
Strong Women Live Well (from Tufts University).

She also has many books (check Amazon). In essence she shows you how to start a very modest movement program, taylored for patients with health issues. Following her guidance, you will not hurt yourself, and you can progress very slowly at your own pace. She had enabled people to get out of wheelchairs, etc and back into a more active life.

PNers also benefit from l-carnitine supplementation. This will help muscles too.

Good luck!

[MelodyL]

My Alan inhales the whey protein shakes.

Made him a completely different human looking building. Filled him out. It's got lots of good stuff in it. He gets the whey shakes at GNC. Combined with his exercise regime, he's turning into ROCKY!!!

Want to know the best flavor shake?

The Chocolate.

Tastes just like a chocolate milk drink.

He mixes it with skim milk and 4 splendas. He likes things really sweet.

I tasted it and could not believe that this is low-fat, virtually sugar free (it has 1 gram of sugar). )and full of protein.

all the best,
Melody

[LizaJane]

When I began yoga a few years ago my yoga instructor said that he was taught that if you don't have feeling from a muscle, you tend not to use it, and then it atrophies. He focussed on moving small muscles in my feet, and they came back pretty quickly.

[dahlek]

Your doc/neuro for an exercise program, either at home or at a PT's office. Thing is that neuros' usually don't think about it as they are treating the NERVES, not the rest of you. Working w/a good therapist...one who is familiar w/neuropathies can be a really rewarding experience. yes it can hurt, but if you do lots of 'little' steps, and exercises you can do at home that use very little equipment, and learn to do them SAFELY, you can surprise yourself at how well you can progress.

If it's hard, try it. Next time, try doing it a couple of extra more times. If it HURTS don't do it. When you get to the point where you either have limbs cast in concrete, they are trembling, or have gone TOTALLY dead. STOP.
Were it not for the PT and the exercises I can do at home. I would be chair-bound myself!

Hope is there - you just have to find it and use it well - j

[karen nichole]

Hey Joe, I have had two LP's and the first one showed I had had a virus, but didn't have MS. The second one showed the original virus was gone but other than that I'm not really for sure. I'm sitting here trying to think and I just can't remember. I have had two nerve biopsies and one muscle biopsy. They showed some swelling but it wasn't consistent with the emg studies. The dr's want to do some more testing. I'm not for sure how much more of the same type of tests I want to keep repeating...............what do you think? I do remember the dr's saying something about autoimmune ds & that is why I'm on steriod infusions. Let mee know what you think.karen nichole

[karen nichole]

Hi Noong,
I am finding out all to well the length of time it does take to diagnose and find the right course of therapy.
I am appreciating all the good vibes. I am sending vibes to you for a peaceful and pain free weekend. Happy belated turkey day.karen nichole

[karen nichole]

Melody, I appreciate all your advice on the protien shakes. I like chocolate also but I mix Jay Robb's Whey protein-Vanilla with about 5-6 frozen strawberries & approx. 8oz of water. It is delicious. Jay Robb has the best tasting protein. My husband works out alot and I have tried many different types of protien. The web site is JayRobb.com, thanks again for all your information.karen kranz

[karen nichole]

Mrs. Doubtfire, What is the supplement I carnitine? I have never heard of this and my doctors haven't said a word about this supplement. More information would be great. Thanks,karen nichole

[karen nichole]

LizaJane,
Appreciate the info. Is thier a specific type of Yoga instruction I need to seek. I haven't ever taken yoga instruction before and I'm not sure my feet are ready for yoga. Yoga seems as if I would be doing alot of different positions and holding in that position. I feel like I would be doing alof of falling over on the floor. Thanks for the info,karen kranz

[karen nichole]

dahlek, I have been reluctant to ask for PT because last time I went I got hurt pretty badby doing certain things. I think maybe I was just too acute at that point. I could barely make it out of the house and into the PT facility I was already worn out. I'm better than I was last year, mobility wise I mean. That might be changing if I don't regain some muscle strength in my hands and feet. I will ask, thanks.karen kranz

[HeyJoe]

YOu have certainly been through the testing mill, two lp's, two nerve biopsies, and a muscle biopsy ...wow.....if it were me ( and of course I dont have all the answers or information) I think I would be willing to do blood tests and a periodic emg/ncs, unless something specific comes up and see how whatever autoimmune treatment they are going to give you goes. Meanwhile doing PT and exercize to keep my muscles from atrophying. Keeping some sort of log or diary of your daily symptoms and how you feel may help you to see some long term trends and which direction you are going in.

[karen nichole]

HeyJoe,
I understand keeping a diary will help. I did it for about a full year and I went down hill that year. I got tired of doing that. I find myself with nothing to do but I get too busy to do things if that makes any sense to you. I'm going to try and start swimming again. It's a goal anyway, I don't even know if I will get through a lap!!!!!!!! What type of treatments are you on? Are they stopping & reversing damage or just kind of holding your own? Everytime something comes up I just wonder what other people have tried and the response. I was told never quit looking for answers and asking questions? I'm going to gather as much info as possible so I know how to be an informed patient. I really appreciate all te good answers and advice I have gotten thru this site. well going to try and sleep,good night.karen nichole

[HeyJoe]

Im not getting any treatments, except for pain. All of my tests have come back negative except for emg/ncs's, including lp, mri,infinite blood tests, diabetes, etc. Nothing autoimmune showed up at all. I have numbness and pain in my feet to my calves and in my hands. So far there is no muscle weakness. I walk the dog everynight that its not raining too hard to try to stay in the ballgame. Ive tried physical therapy but it did not help. Anodyne therapy didnt either. I use a tens machine and interferential therapy ( a kind of tens) machine in a foot bath for pain. I also get strange symptoms out of the blue which may linger for a while but all at once disappear. I was on crutches for a few weeks with being unable to put my feet down without severe pain, walked down three steps and my left foot had no pain at all at the bottom. My latest symptom is feeling as if my right ankle is fused and I cant bend it to get up from kneeling. Its really weird. I just keep trying to put one foot in front of the other.

[MelodyL]

Karen; Hi.
My husband has had idiopathic PN for over 15 years. Last week, he went to the Peripheral Neuropathy department at a local hospital and he's going for yet another Emg, nerve conduction test.

His mom had Guillian Barre many many years ago. Every doctor said "there can't be a connection". But he is going to have every blood test known to man.

My question to you is as follows: you stated that you were tested for CIDP, and it was negative. They will be testing my husband for autoimmune things. Is this the same test for CIDP???
Thanks, Melody

We both think there has to be a link to his mom having GBS.

[LizaJane]

I did Iyengar Yoga, which is very "architectural" and designed for people with physical problems. My teacher forcussed a lot on toes and heels and how to use your feet. I know Hatha yoga is also considered a lighter yoga, and good for people with issues. Tai Chi also is something one can age with.

You can just work on it a bit yourself, also. Try stretching out your toes and spreading them. Feel the skin on the top of your feet and stretch away from your heels, extending from the top of your feet and toes to reach out and grip the floor with your toes. Spread them wide.

Of course, you will NOT be able to actually do this, at first, but thinking it is good enough for a start. Keep thinking it and working on moving them, and you'll be surprised that at some point, the muscles will engage and you'll get some movement. Do this frequently throughout the day.

That was the beginning for me. Good luck!

[dahlek]

as hard as finding a good neuro...they are out there, but I declare they are in hiding at times!
I got lucky when I changed PT places on my 3rd round of PT. The group I work with now works with stroke victims, surgical rehab folks and are very familiar with neuropathies. I've rarely been over-stressed on any exercise task...if I get uncomfortable, I can stop and change to another exercise tasks.

AS for that nasty thing I call 'toe tone'.. This sounds silly, but it's hard when you lack the muscles...take a dozen marbles and put them on a towell, pick each up w/your toes and then work to let them go into a dish. My 'tone' was soo bad at first, I had to smush each marble inbetween the toes and wait for gravity to get them off my feet. Do it for a minute each foot at first and work 'up' to 2-3 minutes. It IS a workout at first, so go slow. The marbles I found at a dollar store. Then work your way up/down the exercise list. I don't know if I've posted it in the 'stickies', if not, PM me & I dig out the sites and post them...

Hope this helps! - j

[A. Carson]

Here's some addtional ideas that have helped me....

I found a great book on improving balance, strength and flexibility. It's called the Backsmart Fitness Plan by Adam Weiss. While this book is not specifcally written for people with pn, it has some great stretches and exercises that can be done at home. The book is an easy read and well illustrated. The stretching and the balance exercises have really improved my flexibility and reduced the pain.

Also you may want to read the Coping with Peripheral Neuropathy series of books by John Senneff. He provides some good information to include nutrional needs.

Lastly, I am a big advocate of fish oil and cod liver oil. I feel it has significantly helped in me pain reduction and increased my tactile strength and boosted my sensitivity to vibration.

Good luck!

A. Carson

[rickops]

Hi Karen Nichole,
This update on my daughter is long overdue. I found much encouragement from this site, and the kind folks who wrote back to me with encouragement. Now, perhaps, I can return the favor.

My daughter Stephanie suddenly was afflicted with a mysterious peripheral neuropathy - first her right big toe then her right foot, then her left foot, then her right hand, and finally her left hand, all became uncoordinated, with accompanying muscle atrophy. This was a motor neuropathy, not the more common sensory neuropathy. All this happened progressively, within the space of about 2 months. We were frantic, of course, as was our family doctor. We spent 2 weeks at OHSU, the premier medical facility in Portland, OR, then 10 days at the Mayo Clinic in Rochester, MN. Everyone said they didn't know what it was, but were sure it WAS NOT MS, ALS, and some of the other things we were terrified of. They kind of left us hanging there.

Then, by the grace of God, we stumbled onto a couple of naturopaths, who use a type of biofeedback machine to test the body's response to vibrational stimuli across the body's accupuncture meridians.

These people came highly recommended by folks I respected, or, believe me, we would never have gone to them. My wife and I are about as conservative and 'western medicine' oriented as anyone you've ever known.

But we had run out of options, and didn't want Steph to continue to get worse (she was planning to start college in the Fall!).

These folks asked questions and examined Steph for nearly 2 hours. They found that she had a rather severe dairy allergy and a wheat allergy that she has had probably since infancy. We had no idea about these allergies, and dairy and wheat had been part of her diet all her life.

This sounded way too simplistic to us, especially after all the painful and invasive tests at the other medical facilities. But we had nothing 'better' to try...
They started treating Steph with supplements, a strict 'detoxification' diet, and of course, immediately eliminated the dairy and wheat from her diet.

The return of energy and vitality was almost immediate (within a couple of weeks she was sleeping much less, and feeling much better). The strength and coordination began to return to her hands and feet in basically the same order that she lost it.

We went to another naturopath in Salem, OR, who is also an MD. He was able to prescribe a powerful immune system booster which greatly improved her immune system, which they said had 'crashed' - thus causing all the symptoms which scared us.

She is now enrolled in college - in the 'performance piano' degree program no less. She still has some muscle atrophy in her left hand. She is going to a massage therapist, who uses reflexology, massage, and stretching exercises to stimulate the muscle tissue to rebuild.

The key to starting Stephanie's recovery was to discover that her digestive system was severely compromised - much as what happens with celiac disease - and that can have HUGE physical consequences. Peripheral neuropathy is a rather common symptom of severe intestinal disorders. We learned that we have peripheral nerves in our intestines and organs, as well in the hands and feet. The intestines are VERY MUCH involved in the body's nervous system.

I would strongly encourage you to visit a reputable naturopath regarding your neuropathy. Ask some of your acquaintances for the name of a respected practitioner in your area. Naturopaths, we've learned, look at the body from a different perspective than the conventionally trained doctors. I am not trying to disparage conventional doctors in any way. I'm just saying that in our experience, naturopaths have diagnosed and treated our daughter successfully, where some of the finest medical facilities in the world have not. Perhaps, had we gone to a specialty gastrointestinal clinic somewhere, Steph's problem would have been discovered. BUT, the naturopaths locked onto the problem on the first visit, and Stephanie has steadily been recovering since acting on their medical advice.

These symptoms are very frightening, but I hope that you can get to someone soon who can take a legitimate look at possible gastrointestinal issues you may have. Conventional medicine does not have all the answers.
I pray that you can find relief soon.

Best wishes,
Rickops

[chochmeh1]

Yes...i have atrophy in my left foot and ankle with PN...just diagnosed and didn't know i had any atrophy until i was tested..i am just so thankful it wasn't MD or ALS even though at the time (because i was having spasms and twitching along with numbness and burning) -the Doctor performing the NCV and EMG mentioned ALS, but ruled it out even though i had atrophy. He said i have PN and possible spine problems...i thanked him as you can live with PN for a long time, but ALS patients aren't so fortunate...my heart goes out to anyone suffering this awful disease.