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I would call them now and see if you need a referral or if they will just schedule an appointment.
 
The MDA will also provide a second opinion and/or a diagnosis. So, yes, I'd contact them sooner rather than later.
 
Re: Need opinions on possible ALS ALS diagnosis

I received her medical records when discussing the EMG the doctor says "performed outpatient and is consistent with mild axonal neuropathy. She has drop of CMAP and SNAP amplitudes. There are no myopathic or neuropathic changes by needle study." Can anyone better explain this? Also does anyone know what Immunoglolobulin G is? The reference range is 700-1600 and hers is at 687. Thanks for any help.
 
Also on the report what should we look at specifically.
 
IGg are antibodies used to fight various infections in the body. Axonal neuropathy, I believe, is a type of peripheral neuropathy, and can have many causes--it effects sensory nerves -- tingling, pins and needles, pain. CMAP and SNAP are tested via the NCV--which I THINK is a good indication that the findings aren't consistent with ALS. They can cause weakness.

The NCV is normal in ALS. No myopathy is a good thing. Basically, and Wright can confirm--it sounds like that study found mild peripheral neuropathy. What did the DOCTOR say it meant? (I am NOT a doctor)

There are a lot of neuropathies and various treatments for them. In ALS, the EMG shows denervation and reinervation. I don't see that in your results--and the NCV is generally normal. What are are these results from?
 
Re: Need opinions on possible ALS ALS diagnosis

Thank you for your help. The doctor has not gone over ANY test results with us... It's like he runs them and we never hear about them again... At first I took that as "no news is good news", but now I'm very frustrated. I want to be told what is going on and so does the patient. She is frustrated and thinking the very worst because he continues to beat around the bush and never explain any of his tests. This is the main reason I have requested her test reports and are sending them for a second opinion.
 
I'd raise hell with his office if I were you. That happened to us with my second opinion and Brad eventually called her office, spoke to her assistant after being transferred all over the place, and was down right loudly scolding her. That finally got some results. Speak loudly if you have too but stay calm at the same time. You don't have to sound irrational. Just stern and no nonesense. Good luck!
 
Re: Need opinions on possible ALS ALS diagnosis

I called the contact number that a member previously posted and the ALS clinic is seeing her next week! They seemed like they would be much more helpful, also told me that the doctor wasn't a board certified neuromuscular specialist... Which we were told he was by the referring doctor. I pray that it's not ALS but my grandma is certain it is. I admire each and every one of you, caregivers and those who are fighting this nasty disease.
 
I haven been recently diagnosed with PMA or SMA- My illness started in 2003. I am now paralyzed (both legs). Dr. Pulley. neuromuscular specialist at Shands Jacksonville gave me a flyer and told me to enroll in a ALS data base, did not talk to me about any of the symptoms or nothing, gave me an appointment to come back in 3 months- what a disappointment! I also had a swallowing test and it was normal although i chock a lot and I can't keep my throat clear- I also have a problem with my lungs the chest area hurts and it feels like I have some fluid in it. I just had sleeping test, it was horrible- I do not know the results yet, I was living in Florida but because the Treatment was so poor I picked up and left for Texas here I have had better doctors and I am now waiting for a neuro specialist. I am receiving PT- water so I can deal with the pain, it is working because although I am in a wheel chair I can get up and walk- Yes!. For me in order to get the care needed I read and read and made a list of all my symptoms and began to see the doctors needed. I actually prescribed my own orders. What is killing me right now is my breathing and chest congestion (mild but annoying) I hope I can get a breathing machine in case I needed- My doc said medicare does not pay for the pulmonologist? so she went around and order the sleeping test. My upper body is strong but it is beginning to feel like my legs heavy and tired. my mouth and neck gets spasms and weird twitching like my legs.. What a diagnosis hope my second opinion work in my favor here in Texas- I need to explore the ALS clinics here in Austin in case- Another thing here in Texas medicaid may pay for my care at home since I am not able to cook, clean, dress my self etc. Been cared by a friend now for 2 years. I see Disability as an early retirement! Is this ALS? I get pain in my lower back and pain in my legs - they also get very cold- I take now 2400 mg of neurontin per day. Keeps me flying at times but gives me spaghetti legs. Helps with the pain but I have stay in bed. Feel very tired at times. I miss my job I was a foreign language teacher. Can't do it no more!
 
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