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KANSASTOM

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Can ALS be diagnosed with bloodwork, MRI and an one EMG/NCV only? My diagnosis of ALS blindsided me since I wasn't even thinking about that particular disease. I am also wondering if the neurologists should have asked me about my family history. What role does hereditary entities play in the differential diagnosis of ALS? Does everyone that has a diagnosis of ALS had hereditary entities ruled out? Now that I know more about this disease I am wondering about my father and grandfather, who both have rheumatoid arthritis in their hands and feet but wihout pain.
 

awieleba

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arthriris

Just a question, your father & grandfather have arthritis w/o pain? my family has bad arthritis and I at 36 have osteo arthritis and I tested postive for the arthritis gene. MY grandmother had awful pain, she could barely walk at the end and was in a wheel chair.

My good friend has rhuematiod arthritis and it is bad with her hands and hips and feet deformed--she has reallllllly bad pain everyday. Already had 2 hip replacements. I know others with rheumatiod arthiritis and they all have pain. (this is what I thought i had 6 months ago due to the strange pains I was getting but did not have the rf factor elevated enough)

can your dad and grandfather walk and move about? any weakness? are they on any meds for this? (immuno suppresents). or steroids?

Are you thinking that you may RF vs als or are you thinking they may have als vs RF? i am just wondering. You know how nosey I can be already! I hope you dont mind. The arthritis really interests me after finding out that I have that gene. (only 8% of the population will have it the, hla b-27gene, and of course like everything else, I fall into the low percentage)

take care and let me know about this RF!

april
 

Sammantha

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Hi Tom, sorry to hear of your diagnosis. All i can say is that rheumatoid arthritis affects the bones and joints. If your EMG was abnormal then your muscles were denervated and Arthritis does not do that. The only other test that might help is a muscle biopsy. They probably did not order one because the EMG did not show myopathic changes that correlate with a muscle disease, but one never knows. Arthritis is very common, if your family members have symptoms similar to yours maybe it is a muscular dystrophy. The only thing is muscular dystrophy's dont cause UMN signs, and for you to be diagnosed with ALS you had to have had these signs in at least two areas. If you want to research it you should get your medical records so you know what you are dealing with. Good luck, Sam
 

KANSASTOM

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I do not have any UMN signs although I still recieved a diagnosis of ALS. But I am now thinking that my grandfather and father do not have Rheumatoid arthritis but rather some sort of neuropathy which looks like rheumatoid arthritis. I was tested for rheumatoid arthritis and it was negative. Is it possible for some hereditary neuropathies to look like ALS on the EMG?
 

crystalkk

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Tom,

Please make an appointment for a second opinion with ALS specialist or nueomuscular specialist I am begging you.

Was the Nuero that diagnosed you just a general nuero? I believe you said in your orginal post that you have had no progression in leg and foot for over a year.

Were your grandfather or father diagnosed with RA from a specialist.

How were your reflexes were they normal or declined or absent?

Do you have a copy of emg if so can you post the results.

Yes it is possible for nueropathies to show up with the same finding as ALS on Emg. And you said you nerve damage was distally which is how mostl nueropathies present.

There is no definite test for ALS it is a matter of ruling everything else out. If you have a dirty emg they also look at the clinical picture. Reflexes etc, which would be brisk in ALS and for other UMN signs. Which you say you don't have.

Sorry for all the questions? I am not a dr. but it just does sound right without any UMN.
 

KANSASTOM

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I was diagnosed by a general neurologists and my EMG/NCV was done by a physiatrist. I have requested my EMG reports but they will not release them to me, I am not sure why. I think my next move will be to be referred to the MDA clinic. I really think this neurologist was very quick and careless in his diagnosis or at least I hope he was.
 

KANSASTOM

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I forgot to say eight years ago my father was in a car accident requiring surgery. Before the surgery they wanted him to see a rheumatolgists which said my father did not have rheumatoid arthritis. Neither my grandfather (deceased at 89) or my father (currently 79) have been officially diagnosed with Rheumatoid Arthritis.
 

crystalkk

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Tom

You might have to request a copy of your report from the physiatrist and sign a release paper. I didn't even know a general nuero can officially diagnosed ALS. Normally they would refer you to an ALS specialist or nueromuscular specialist.

The MDA clinic is a great choice.
 

KANSASTOM

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Thanks for your input I am going to call my PCP today and ask to see a specialist. I received this diagnosis on 4/29/2008 and it has caused a great deal of anguish, mostly for my wife and kids. The more I learn about the process of diagnosing ALS the madder I become becasuse this neurologist did not reference the criteria for ALS instead just went with his gut instinct.
 

MtPockets

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You have a legal right to copies of ALL MEDICAL RECORDS and test results. If they were done in a hospital go to the records department and sign a release and request for medical records and they will give you a copy. Some record departments charge you for copying them, but they are required under Federal law to give them to you.

I have had three opinions about the diagnosis of ALS. Do not stop at one. Find someone who specializes in ALS ion your area and go to them. You can check with the ALS Association on line to find out who they recommend. http://www.alsa.org/

My best recommendation would be to go to a ALS Clinic.
Here is one in Kansas:
Keith Worthington Chapter
Central/Western Kansas - Branch Office
3450 N. Rock Road, Suite 211
Wichita, KS 67226
316-612-0188
800-553-9056
316-612-8768 (fax)
[email protected]
Visit our website for more information
 
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