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Hope1935

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Jul 27, 2011
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17
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Loved one DX
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Oklahoma
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Western
Hello,

I'm needing some answers from anyone who could help me out in any way. I have a very active family member who up until 6 months ago was in good health over all. She is age 76 and has worked 40+ hours a week up until the last few months. She has extreme fatigue, muscle weakness, chokes during meals, slurred speech, and can't do many of the daily activities she could do a few months ago. We have been seeing a neurologist and have had a series of blood tests done, an emg?, bone scan, MRI, etc. We saw a specialist who said he suspects that it's a Mortor Neuron Disease. We are having to wait three weeks before the next text, but I'm worried her strength may not last that long. She is now having to use a walker and can only work a couple of hours. She becomes very shaky, her voice becomes more slurred throughout the day, and she seems to have some problems with her fine motor skills. She complains that it hurts to hold her head up so has gotten to the point where she holds her head down. I have also noticed some excess salvia. Her doctor said her tongue has loss muscle mass and she couldn't bring it up to the roof of her mouth. Just wondering if it likely to get the ASL diagnosed or if there is other diseases that fit these as well. Thanks for all the help.
 
Do you know the results of the emg?

I'm very sorry your relative is having such problems. I sincerely hope that it is not ALS...
 
I am so sorry to hear about your husband. Were his symptons close with any of these. I'm very concerned. She is losing the ability to lift objects and things very rapidly. I'm 23 and lost my mom suddenly from a heart attack 10 months ago so the thought of seeing my only grandma go through such an ugly disease terrifies me. What tests did they use to determine a diagnosed for your husband?
 
I'm very sorry to hear your grandma going through these symptoms. It would be best to get the EMG test at an ALS clinic...I hope for her sake...and yours that it is not ALS. Good luck to you and keep us updated.
 
I contacted them today and will be sending all of her results to him. Her doctor has not gone over any of the test results with us. I am very frustrated in not having any answers.
 
Understandable...unfortunately some times it is a long wait. It sounds though to me you have gotten the majority of the tests 'out of the way' in a short amount of time...about 6 months you said. It takes some PALS years and years to get diagnosed. Hopefully with the quickness of your grandmother's situation will help speed up the diagnosing process...to whatever diagnosis it may be. Prayers with you...
 
I'm hoping to get answers soon people ask on a daily basis if she's had a stoke due to her slurred speech. It's very frustrating not knowing answers with a wondering mind. I've kept ALS as a last resort diagnosed but when the doctor told her she didn't have MG and he was leaning towards a MND all my fears came to the surface. Is there a specific test we need to look at? Shes had all kinds of bloodwork, an emg (another scheduled for three weeks, spinal tap, bone scan, MRI and several tests where the doctor uses a vibrating little device?! He never has called it anything or explained what he was doing. Thank you for your help and advice.
 
Guess I'll have to be the one to mention the elephant in the room. From what you've posted I would be prepared for the worst. Older people quite often progress rapidly. The EMG & NCV are the two tests along with a clinical exam that are the ones to tell if it is ALS or MND. I wish I could be more positive for you but I'm giving my honest opinion based on your post. Sorry.

AL.
 
On top of what Al already said--demand the answers from the neurologist. The EMG is the test that used the needles--it shows the damage caused by ALS. When other conditions are ruled out--stroke, various neuropathies, CIDP, etc, -- only then can or should ALS be diagnosed. A stroke would have shown on the CT and/or a brain MRI. I've never heard of MS striking someone in their 80's, so I'd imagine it's been ruled out as well. With her permission--demand the answers. Her doctors may have told HER something they can not legally divulge to you by federal law.

The other test you described with the probe type things was a NCV. Nerve conduction study. It is normal in those with ALS. The EMG, if it is ALS, would not be normal.

They need to diagnose her--so she can get the help she needs. If her head is hurting from holding it up--she needs a neck brace. If she's having trouble walking, she needs a walker, or more likely still, a power wheelchair to prevent falls.

The ALS association will help with getting those items, as well as medicare. And assuming your ALS association has a loaner closet--pretty quickly--once she's officially diagnosed. The neuro should at least be treating her symptoms--the head droop, etc. An ALS specialist WILL treat them if the one she's seeing now won't.

Type in ALSA in a search and you will get the site for the ALS Association. I'd post the link, but links go to moderatation.
 
Sorry you are dealing with all that right now. From what you've posted it doesn't sound good :( There are cervical collars that will help. Not the foam ones you see for neck injuries those don't help that's what we tried and it was useless because you need to support the head not the really the neck.

If the excess saliva is causing her to choke at all there are things that can be done to reduce it. There are lots of things that can help make her more comfortable right now. Make a list of all her symptoms and discuss with her doctor how to help her with them.

Best of luck to you and your family!
 
Re: Need opinions on possible ALS ALS diagnosis

Thank everyone for your help and suggestions. It's greatly appreciated. Its very depressing to think of the path she's about to go down, but I have come to the realization that something is VERY wrong. She has always been very active, done her own yard work, worked full time in the business she built 40 years again.... And within soxonths that all stopped. I am the only grand daughter and have been extremely close to her. I see her every day now and have always seen her atleast once a week. I realized the extent of how bad she had gotten when she wasn't able to to my college graduation due to she didn't have the strength to walk to the stadium. I have taken her to every doctors appointment and been in the room with her because she can't understand the doctor very well. I will be demanding the EMG be faxed to us today. I asked the doctor is there anything we could do at home until we got a cplete diagnosed and his response was take some vitamins for energy. I am a big believer I'm natural remedies and vitamins.... But I believe in this case more is needing. I am much more educated now and I appreciate you all for that. Good luck to each of you. I'll be back with any answers I get. I couldn't find an ALS place in my state.. Is that possible? I contacted one on a joining state.
 
Wow, you're right--there is not a chapter in Oklahoma. Contact the national organization. Also the MDA. They will be able to help you, I'd think.

I hope you get some answers!
 
Re: Need opinions on possible ALS ALS diagnosis

Hope1935,

Sometimes, it takes a while to diagnose a MND even though the symptoms are staring everyone in the face. And your grandmother's neuro has told you that he believes that she has a MND -- he simply hasn't specified which one because he hasn't observed her for long enough to be able to see the progression of the condition. It's a very common thing with the diagnostic process for MND.

There is an MDA-sponsored ALS clinic in Oklahoma City. Here is the contact information:

MDA/ALS CENTER AT INTEGRIS SOUTHWEST MEDICAL CENTER
(405) 644-5170
(405) 644-6112 FAX

Brent Beson, M.D., Director
4221 S. Western, Suite 5010
Oklahoma City, OK 73109
 
Re: Need opinions on possible ALS ALS diagnosis

Thank you so much for the information. Do we need to stay seeing this doctor to get a diagnosed before we contact the ALS center? Or contact the center now?
 
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