Willow
Distinguished member
- Joined
- Dec 28, 2006
- Messages
- 102
- Reason
- DX MND
- Diagnosis
- 04/2012
- Country
- CA
- State
- East Coast
- City
- NA
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.
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.