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Terimolinaro

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Learn about ALS
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Ca
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Auburn
Hello,
This is my second post. I am a 44 year old woman. My symptoms started four years ago with foot drop. About three months after that I started having a severe problem swallowing solids and liquids. Since then, I have two podiatrists and my PCP along with a gastrologist. I have had muscle wasting in my lower left leg, the only pain that I have is from not being able to walk correctly.
I was referred to a neurologist back in October and he ordered an MRI of my cervical and lumbar spine as well as a nvs end emg and a swallow study.

This is my concern, after he performed the ncs and emg, he said he was highly concerned that this is Lou Gehrig's disease. At that time I new absolutely nothing about this disease. He ordered a bunch of lab tests that I believe came back normal, MRI of cervical lumbar, thoracic spine and brain. Brain came back normal, and there was some evidence of compression in the back. I have no numbness or tingling. The best I can describe my leg problem is loss of function. The neurologist said my nerves tested healthy but my muscles did not.

My neurologist wants to see me every three months, my question is should I be pressing for another opinion, doing something more. Is it normal for the neurologist to have me wait and see?? I am trying not to be so worried and keep going on with every day life, but it is difficult. From what I have read on here, if it is Lou Gehrig's, I would think it is really slow progression.

I do not want to waste precious time, any thoughts on this from those who have been through this would be much appreciated. Thank you four your time.
 
Teri, yes?

Teri, is this a second neurologist with a second opinion. You definitely need a second opinion, preferably from a MND specialist.
 
Second that. Forbes Norris and UC Davis both have ALS clinics in Sacramento. I'd head to one of those.

If your nerves are healthy and muscles not, that would suggest a myopathy, and some of those are of a type where treatment with steroids or IVIg, depending on the actual disease, might actually help you. Additionally, some can be drug-induced.

Anyway, you need to know what you have and what, if anything, can be done about it, so I'd make some calls Monday.

Best,
Laurie
 
Yes, this is Teri. I have only seen the one neurologist. Thank you for responding again. I really do not know how or where to go for a second opinion but I guess it is time I learn. I will keep you posted.
 
Thank you for telling who to call. Much appreciated.
 
Hello, I just got a copy of my nvc/emg report from my neurologist. Here is what it says his findings were:
Clinical impression:
Abnormal study. There was evidence of profuse fasciculation in nearly all muscles tested. In addition, signs of acute and chronic denervation were present in the cervical lumbar and thoracic myotomes. Although, these findings may be consistent with motor neuron disorder, at this point, the clinical exam does not fulfill accepted criteria for diagnosis of sporadic motor neuron disease. (Amyotropic Lateral Sclerosis). Recommend repeating the study in 6 months and further investigation of current neurologic symptoms.
Any thoughts?? Good or bad news??
 
Very worrisome to be honest. I would make an appointment to see a neuromuscular specialist for a second opinion as you have been advised previously here. You may get the same answer, sometimes they have to follow you before there is a clear diagnosis
Sorry I wish I could say it is not concerning but it is
 
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