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tupeloattorney

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Hi - my 65 yr old mom was told Wednesday that she "probably" had ALS. I am so confused because of her symptoms. She had several tests done - the ones I know about are MRIs all over, including brain, and a nerve conductivity test. The doctor told her that she had several markers for ALS but not enough to say for sure that is what she has. That the reason could be beginning stages of ALS. No for sure diagnosis, no meds for pain, no support, no help, nothing on Wednesday. The only thing the doctor said was that she needed a walker and told me in private that it may be time for a wheelchair soon. I immediately went into research mode and called University of Ill. Medical Center and scheduled an appt at the ALS clinic for october 9th. I just hope she goes. We live in MS and she doesn't want to travel I believe. I will try to briefly tell you of symptoms:

1. Less than a year ago she started falling. In hindsight is seemed like she couldn't get her toes to act right when going up steps. Her feet have begun turning out - actually curving out. She went to a podiatrist who gave her shoe inserts and said something about the tops of her feet....
2. She has begun falling more and more, with no indication of feet causing it - no warning that she feels like she is about to fall, she just goes down. She just started walking with a cane prior to Wednesday. Her gait is extremely slow and it looks like she's having to pick her feet up more than normal to walk.
3. Burning in her face started 4 years ago and hasn't gotten better. Her checks burn she says. She chews gun CONSTANTLY and says that helps her checks.
4. She said her legs burn and ache.
5. Her stomach burns (no ulcer) after eating - she says that it is caused by cholesterol?
6. Her mind is failing her. She has a hard time remembering names of people she knew but doesn't see very often. She gets my children's names wrong and calls them by another family member. She gets confused easily and knows that she is. (says "i'm confused", I don't understand") She repeats stories of events that have happened recently in her life several times. She was prescribed Arecept (sp?) for her memory Wednesday but she doesn't understand why she had to take it and I suspect that she isn't taking it.
7. I've seen her hand twitch - but she doesn't tell the doctor about it. She has weakness in both arms/hands, but not enough that she can't pick things up.
8. She has problems finding the right words....I can't carry on a conversation with her much because it is all me filling in blanks for her when she is searching for a word to finish a sentence. I told her about the Chicago appt. and she can't remember "Chicago" - she gets words mixed up - she called my sister and told her that she was being sent to "California".

Her full blooded brother and sister both died of ALS. Both definate diagnosis.

Her 1/2 sister had Alzhiemers or severe dementia - I don't think she was ever officially diagnosed.

I read the burning can be a sign of MS. The doctor Wednesday said that they tested her for everything that it could be and ruled everything out other than ALS. I called yesterday to find out for sure what diseases they ruled out - but never got a call back after leaving a detailed message for exactly what I needed to know. Surely they would have tested for MS, parkinsons, MD and CIPD?

Sorry so long...
 

CindyM

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Hello-I am sorry to hear about your Mother. It is an awful blow and I don't blame you for wanting to confirm the DX.

Some people go to another major neurology clinic that has a major university attached to it in order to get a second opinion. If she has family experience with the disease she may already have some thoughts. What does she say about her DX?
 

tupeloattorney

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thx for reply

My mom is not going to believe the diagnosed unless a doctor tells her that she for sure has ALS. She's mad at the doctor that diagnosed her b/c she says he should have never said that she might have it unless he knows for sure. She's mad b/c she went to the neuro for help and left with no options or answers. She doesn't understand what all the doctor said about the tests and all she wanted when there was pain meds. The doctor tried to tell her that she has tramadol for pain, but her internist told her to take that med if her stomach was hurting, so she argued with the doctor that that med wasn't for pain, but for her stomach, so would not help with pain anywhere else. The neuro did not handle that situation well. I think she is not understanding or coping with any of this right now.
 

laurel

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Hello,
I am sorry that you find your self in this situation with your mother. You didn't say whether it was a family doctor or a neurologist who queries that she has ALS. But even if it was a neurologist, her best bet is following through with ALS clinic appt. that you have made. My husband was misdiagnosed with Carpal Tunnel and then had a query of ALS, but finally was diagnosed with CIDP at a neuromuscular disease unit. Her symptoms could be any of the diseases you mention, but the most worrisome info. you related was that her two siblings had ALS. However it is important to get that second opinion. I'm sure your mom is scared, but hopefully you can get her to that Oct.9th appt. Good luck and let us know how things go. You have alot on your shoulders and we are good at listening and supporting here on the forum.
Laurel
 

Zaphoon

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Tupelo,

There is a variety of MS known as PPMS (Primary Progressive Multiple Sclerosis) and it usually will not show in an MRI. Its onset is fast and differs from other forms of MS in that it is more constant in progression and does not remit or exacerbate (sp?). One of my sisters has MS.

The sensory thing with burning face doesn't sound like an ALS symptom to me.

Best of luck and I hope it winds up being something treatable.

Zaphoon
 

tupeloattorney

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Thx for reply

I appreciate you all responding. We are all stressed in the family about what the future holds. This forum is a great information and support system. We are going on the 9th - I bought the plane tickets yesterday. I'm sure I'll post again....
 
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