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Willow 12-28-2006 04:54 PM

New here and looking for direction
 
Hello I am new here and looking for some direction. I am hoping some of you may be able to point me the right way.
Here is a bit of history;
Middle aged female, history of osteoarthritis in my back, right side weakness, migrains. Appox. 6-7 months ago noticed a lump in my calf muscle. Not painful at the time but has become very painful over the last several months. Sent to a specialist(orthopedic) and MRI performed and it was thought to be a fatty tumour. Sent to another specialist (othopedics) and have been told that it is the muscle itself....the neurons to the muscle have been cut off/died....ghost muscle (?) as he called it. He feels I have some sort of dystrophy or MS. He wants me to have an ENG (?) test and presently I am waiting for an appt. with a neurologist. He was quite perplexed that this is the first "sign" of troubles. There are other things that I have always just put off as having osteoarthritis or just being me and I have never pursued them. Right now I am a bit uncomfortable in going into more detail......so many dots are seemingly getting connected and I don't want to "jump the gun" so to speak.

Estranged family history - mother was told many, many years ago (50's - 60's)she had ALS. She certainly had some sort of muscular problem but we never believed ALS because she lived so long. Our understanding of the disease was that it was a fairly quickly dibilitating fatal disease. She ultimately died 10 yrs ago (age 66) from a brain tumour but was very crippled and needed assitance even before the tumour. As children we would pull on her hands /arms/legs to stop the cramping. She had "hollows" in her hips where the muscle had died.
I also have an older sister who has some sort of muscular problem and uses a wheel chair for assistance. She has been put under the diagnosis of fibromyalgia. She has "spastic" episodes. Has never had an MRI because she is afraid of confined spaces and has the spastic episodes.

I have been searching for the terms he used, denervation, muscle neurons, and ghost muscle and most searches do lead me back to what he said. The MRI images I had where both facinating and unnerving! The difference between the two legs is astounding to say the least.
I would appreciate any thoughts or direction with this.....I have a two month wait to have an appt. with the neurologist and then a wait for the test to be done. I would like to learn as much as possible about muscular neuron damage, it causes etc. as I can.
Thank you in advance for any help you can offer.

janf 12-29-2006 12:21 AM

Advice
 
Dear Willow. my, do you have a lot of hist. going on here. I have been diag. I also have severe back deteriation. I don't know where you live but, please go to an ALS clinic. They don't play around. I live in Ga. (SEE MY PROFILE) I could not get on with my life until I went to the ALS clinic in ATLANTA GA. they are great.....My prayers are with you. And yes, read all you can find. Let me know if I can help. JANF.

BWk 12-29-2006 12:59 AM

Willow, I wouldn't jump the gun yet on als, my neighbors mother had als and she didn't get it [als], but she did end up with MD, but she does real well even after 15 yrs. of it and in fact she is up in Denver [went up for christmas] and is stuck there in the horrific snow storm they are having there now. Anyway hang in there until your appointments. Barry of N.M.

Willow 12-29-2006 02:38 PM

Thank you Jan and BWK for the replies. They are very much appreciated.
I have searched our area and have found no clinics here so I will just have to wait until I see the neurologist. We are a smaller area in Canada so I don't think there are any clinics here. I will continue to check though.

Our family history does present with some sort of muscular problem, it concerns me with our own children and what may be passed on. As I said in my orignal post my mother was told many years ago that she had ALS, but we were never able to have it confirmed. She lived roughly 36 yrs after being told. Have any of you heard of that longevity with ALS?

I have never heard of MS or ALS etc. being discovered from a lump in the calf....have any of you?I'm in many ways I'm leaning towards the osteoarthritis has cut of the neurons somehow. I'm still trying to figure out how that could cause a "lump" which has grown (Dr. confirmed growth) and now the leg is quite painful. The lump itself has never been painful, just the areas around it. You can visually see the lump when I flex the ankle, but it will cramp when I do that most times. If the neurons have been cut off how can I feel pain in the leg? Lots of questions...no answers till after the testing I guess. The only thing I know now is that I have some sort of muscle nerve degeneration... from what cause is yet unknown.
I was diagnosed with osteoarthritis at age 30, was told I have the back of a 70 yr old. There are 5-6 vertebrae that have fused together in the thorascic region and there are 3 in the cervicle region that have degenerated and are "resting" on the spinal cord. That is what the Dr. felt caused the right sided weakness.

If you don't mind I have a couple of questions, maybe some of you could help answer;

Have any of you ever heard this term "ghost muscle"? The specialist was from Brittian and maybe it is a term used more frequently there. I am wondering if it is the same as "atrophy" here?

As asked earlier, have you ever heard of MD, MND, MS or ALS being discovered from a "lump" in a muscle?

What happens to the "dead" muscle?

When I do get to see the neurologist are there any specific things you would recommend I ask? At times I am hesitant to tell him the family history because I don't want his judgement/diagnosis to be clouded.

Sorry for all the questions and thank you again for the responses. I'll keep reading :)
I just wish the appt. was sooner than later as this has altered so much since I first discovered it.
Thank you again


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