josepescado
New member
- Joined
- Oct 6, 2007
- Messages
- 4
- Reason
- Other
- Country
- US
- State
- MA
- City
- Boston
I am in a situation where I suffer from increasing leg weakness. I've been using a cane for about a month now when walking more than a block, can't walk up stairs without use of a railing, and can't move some leg muscles at all.
This all began over two years ago when I began experiencing muscle cramps in both legs and feet in seemingly every muscle at one time or another. In July 2006 I began having some trouble walking due to a lack of foot coordination and then began noticing problems climbing stairs and hills. It has progressed to the point where my thighs have become particularly weak. I have also been experiencing small sporadic muscle twitching. I can still get around, but slowly and with difficulty. I'm afraid, though, that before long my right leg will be too weak to support me.
The first neurologist ordered an MRI and suspected a herniated disk in my back, but after nearly a year seeing orthopedic surgeons and physical therapists, I am now seeing a neuro-muscular specialist who suspected CMT but first performed some blood tests including Lyme. I tested positive twice for Lyme and had ten days of IV Ceftriaxone, but couldn't continue due to an alergic reaction. I'm now on my fourth week of Doycycline. I have not experienced any improvement, but have only gotten worse.
My neurologist is now talking about the possibility of a motor neuron disease. He also ordered a blood test for CMT. I just received a letter from the lab indicating that the test costs $3,355. I'm not sure as yet how much of it if any my insurance will pay. I'm wondering if I should do it, pay whatever, or maybe wait to see what develops.
So far my upper body feels normal and strong. My big question is, if my problems are due to ALS, then how much time might I have wait until I could reasonably expect to experience symptoms in other parts of my body? I've been reading the threads here and it seems that most people experience both upper and lower body problems pretty quickly.
Thank you all for whatever help you can offer.
This all began over two years ago when I began experiencing muscle cramps in both legs and feet in seemingly every muscle at one time or another. In July 2006 I began having some trouble walking due to a lack of foot coordination and then began noticing problems climbing stairs and hills. It has progressed to the point where my thighs have become particularly weak. I have also been experiencing small sporadic muscle twitching. I can still get around, but slowly and with difficulty. I'm afraid, though, that before long my right leg will be too weak to support me.
The first neurologist ordered an MRI and suspected a herniated disk in my back, but after nearly a year seeing orthopedic surgeons and physical therapists, I am now seeing a neuro-muscular specialist who suspected CMT but first performed some blood tests including Lyme. I tested positive twice for Lyme and had ten days of IV Ceftriaxone, but couldn't continue due to an alergic reaction. I'm now on my fourth week of Doycycline. I have not experienced any improvement, but have only gotten worse.
My neurologist is now talking about the possibility of a motor neuron disease. He also ordered a blood test for CMT. I just received a letter from the lab indicating that the test costs $3,355. I'm not sure as yet how much of it if any my insurance will pay. I'm wondering if I should do it, pay whatever, or maybe wait to see what develops.
So far my upper body feels normal and strong. My big question is, if my problems are due to ALS, then how much time might I have wait until I could reasonably expect to experience symptoms in other parts of my body? I've been reading the threads here and it seems that most people experience both upper and lower body problems pretty quickly.
Thank you all for whatever help you can offer.