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mindy0341 05-12-2007 09:18 AM

Not convinced my mother has ALS
My mother just received a 2nd opinion that she has als. I am not convinced as all they did was a neurological exam and emg and nerve conduction study. She has had many weird symptoms that have come and gone through many many years that leads me to think she has an autoimmunne disease. Both doctors would not even listen to us. She has had chills on and off for about 5 yaers with her body temperture going down to 96 degrees, low blood pressure, high white blood count, Lung disease (10 years), a parotid tumor removed last year, graves disease (5 years), rapid heart beat (at least 2 years) Many other things. What do I do to get someone to listen. Where do we go from here. The 2nd doctor was a als specialist but only spent 15 minutes with us. had someone else do all the testing and asking her question. Thay did not let us go in with her untill the doctor gave us the diagnose. They did not want to hear anything about her other symptoms nor did they want any of her prior medical records. Can anybody help me PLEASE.

ticker 05-12-2007 10:33 AM

Re: Not convinced my mother has ALS
Hi Mindy. I am sorry your mother is dealing with so much.

Please see my post on this board at [url][/url] If you think this may be a possibility and if you would like a doctor recommendation, let me know.

Has she had her thyroid tested lately? Is she taking thyroid meds? I suggest asking to have her Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested. They are not usually done but are necessary for a comprehensive view. If you need help interpreting your results, let me know or you can post them on the thyroid board at this site. The people there are very helpful. Thyroid disorders can cause many symptoms. It can take time to get optimal treatment.

Hang in there okay? Do not give up. Your mother is so lucky to have your support.

mindy0341 05-12-2007 10:56 AM

Re: Not convinced my mother has ALS
Thanks for your help. The 2nd opinion doctor said they would test for Lyme and also doing extensive blood work. Supposivly and that is only because we insisted. What is Free T3 and T4? We wont have the blood work back for at least a week. If you know of any good doctors would love any info you could give. She lives upstate NY Tioga County by Binghampton, Ithica, Sayracuse. I never posted a thread before I hope im doing it right. Its nice to know their are still people out there that care.
Thank You

mindy0341 05-12-2007 03:37 PM

Re: Not convinced my mother has ALS
I wanted to add If this is ALS it started in 2004 with slurred speech so they say. My mother had the parotid tumor removed in 2006 which the specialist assured her she would get her speech back. After the operation her face was shifted a lot to the left side and her eye was bulging out. Both the eye and the face went back to normal. It took quite a few months but she looks the same. My question to them was if this started in her face HOW did her face shift back to normal. Wouldnt that be nerves and muscles???? Can they repair???? Also After having lung disease for over 10 years her lung MRi in Feb show a little improvement.

ticker 05-12-2007 04:35 PM

Re: Not convinced my mother has ALS
Hi Mindy. You are posting fine.

The Free T3 and Free T4 are blood tests to check for thyroid function.

I believe that NY has the highest number of Lyme cases in the country. When Lyme disease is possible, it is very important to see a knowledgeable doctor. No Lyme test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable, and the one most doctors run first. I know of two Lyme doctors in NY who come highly recommended: Dr. Kenneth Liegner in Armonk and Dr. Richard Horowitz in Hyde Park.

I am not familar with the surgery your mother had, but I think you make excellent points. What did her doctor say? It is good that her lung MRI showed some improvement.

I hope you can get some answers soon. Please keep me posted on how she is doing okay?

mindy0341 05-12-2007 05:02 PM

Re: Not convinced my mother has ALS
Dr. Richard Horowitz in Hyde Park. Do you mean New Hyde Park on Long Island? I live on Long Island my parents moved upstate a couple of years ago. Doctor did not say anything when we asked about her face and lung. Really he did not answer any of our questions told us we should get a good internist. We are told he is the best in NYC not impressed, actually very un impressed. Can a neurologist emg and nerve conduction test be wrong? Her test was only done by the 1st doctor. Dont know were to go from here. Just doesn't all add up.

ticker 05-13-2007 10:06 AM

Re: Not convinced my mother has ALS
Hi Mindy. I am sorry, but I am not familar with NY. Dr. Horowitz is located in Hyde Park not New Hyde Park. I don't know where Hyde Park is.

I know it is frustrating trying to get anwers. Many diseases, including Lyme disease, are not easy to diagnose. To confirm or rule it out, it is very important to see a knowledgeable doctor.

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