sukilou
Active member
- Joined
- Sep 12, 2008
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 09/2008
- Country
- US
- State
- Or
- City
- Troutdale
I'm new to the forum, and have been recently diagnosed with MND, probable ALS by my neuro. I'm being referred to the Providence ALS Center, Portland, Or, but my appt isn't until Nov 10. I'm 64, will be 65 in Dec, and am wondering about any correlation between age and rate of progression.
I have no bulbar symptoms at this time. My first awareness of something amiss was in Jan 06 when I began to stumble and trip. I thought it was part of the aging process and didn't think too much about it--I just started paying more attention to where I was stepping. After 1 1/2 years of balance problems and many falls, I went to my GP who referred me to a neuro, Jun 07. He noted hyper reflexes, gait problem, no weakness with resistance testing. He ordered blood tests for sed rate, muscle enzyme, B12, and MRIs on head and cervical spine. My brain MRI showed a very small (9mm) meningioma on my right frontal lobe which he said did not account for my symptoms, cervical MRI was normal, and to follow up in a year.
In May, 08, I had a serious fall which resulted in a Smith fracture of my left wrist, and required surgery with plate and screws to repair it. I started physical therapy for the rehab on my wrist, and my PT recommended that I return to my neuro, as my walking difficulties were progressing. I was using a cane to help with my balance. I decided to wait until my 1 year followup appt which was in Aug.
My neuro exam in Aug showed hyper reflexes in legs and arms, spasicity in legs, clinical weakness in right leg, right and left arms, atrophy in right foot muscles, gait abnormality. He ordered more MRIs of brain, cervical, thoracic and lumbar spines. My meningioma showed no change and the others were normal. He then performed a nerve conduction test and 3 hr. EMG. (He specializes in electromyography testing). The nerve conduction test was normal, and EMG showed abnormalities, positive waves, in right arm, hand, foot and leg, left arm and hand, paraspinal muscles. He tested my tongue in 2 places and that was clean. I don't have a written report as of yet.
He said that it would be irresponsible of him to diagnosed ALS without a second opinion, but was certain that I had a MND. I asked him if ALS was a "maybe" and he said "no, it was probable." And again, he said that he had ruled out perpheral neuropathy, myopathy, myleopathy, multifocal motor neuropathy, and that I needed to see an ALS specialist.
So here I am, waiting again, and wondering about progression. There have been a lot of changes in the last six mos, and I'm also wondering about the trauma of surgery and my age being factors in rate of progression. Any thoughts or advice is very much appreciated.
Sorry about the length of post--I wanted to give some background. Thank you for this forum and all for being here. Lonna
I have no bulbar symptoms at this time. My first awareness of something amiss was in Jan 06 when I began to stumble and trip. I thought it was part of the aging process and didn't think too much about it--I just started paying more attention to where I was stepping. After 1 1/2 years of balance problems and many falls, I went to my GP who referred me to a neuro, Jun 07. He noted hyper reflexes, gait problem, no weakness with resistance testing. He ordered blood tests for sed rate, muscle enzyme, B12, and MRIs on head and cervical spine. My brain MRI showed a very small (9mm) meningioma on my right frontal lobe which he said did not account for my symptoms, cervical MRI was normal, and to follow up in a year.
In May, 08, I had a serious fall which resulted in a Smith fracture of my left wrist, and required surgery with plate and screws to repair it. I started physical therapy for the rehab on my wrist, and my PT recommended that I return to my neuro, as my walking difficulties were progressing. I was using a cane to help with my balance. I decided to wait until my 1 year followup appt which was in Aug.
My neuro exam in Aug showed hyper reflexes in legs and arms, spasicity in legs, clinical weakness in right leg, right and left arms, atrophy in right foot muscles, gait abnormality. He ordered more MRIs of brain, cervical, thoracic and lumbar spines. My meningioma showed no change and the others were normal. He then performed a nerve conduction test and 3 hr. EMG. (He specializes in electromyography testing). The nerve conduction test was normal, and EMG showed abnormalities, positive waves, in right arm, hand, foot and leg, left arm and hand, paraspinal muscles. He tested my tongue in 2 places and that was clean. I don't have a written report as of yet.
He said that it would be irresponsible of him to diagnosed ALS without a second opinion, but was certain that I had a MND. I asked him if ALS was a "maybe" and he said "no, it was probable." And again, he said that he had ruled out perpheral neuropathy, myopathy, myleopathy, multifocal motor neuropathy, and that I needed to see an ALS specialist.
So here I am, waiting again, and wondering about progression. There have been a lot of changes in the last six mos, and I'm also wondering about the trauma of surgery and my age being factors in rate of progression. Any thoughts or advice is very much appreciated.
Sorry about the length of post--I wanted to give some background. Thank you for this forum and all for being here. Lonna