Still unsure!

[Mir1013]

Hello everyone, I'm new to the forum and have been using some questions about my dad. He was recently told by his doctor he thinks he has it by the sound of his voice. He started having symptoms a little over a year ago. He started to lose the dexterity in his fingers on his right hand. It just became worse and worse his hand has a lot of atrophy and his fingers curl in towards his palm. He is a little weak in his right leg. He has atrophy in his leg and a little in his arms. He has a log of fasculations in his arms and legs. He recently started taking retulik an medical marijuana, since he started this he has got more strength back in his leg and has much less twitching. His doctor did not say you have ALS he just said his voice sounds like he could be getting it. He clears his throat a lit says it feels like phlegm is stuck in his throat ( but he has always done this) and the weakness in his voice comes and goes some days he sounds perfect others he sounds weak. He took a pulmanry test and all results were good aside from his diaphragm that was only working at 43 percent. He got tested for the DPS and the doctor said he is a candidate for it because his diaphragm is so weak. We asked why all of his results came back so good if his diaphragm was so far
Gone and he said his chest muscles were working for the part that his diaphragm was not. This seamed a little off to me. He has no twitching in his tounge or fAce. He has no problem eating or swallowing. I'm just not sure that he has ALS just because his voice sounds different sometimes. I'm thinking it could be nerves from him worrying about it all. Although he does have signs of a weak diaphragm. Just wondering whats going on! I didnt think with ALS it could get better like with his walking and strength in his right leg or like his speech coming and going.

 

[Alyoop]

Has your dad been tested for ALS.? Or is it just a feeling his drs have. It certainly is possible to diagnose ALS purely by a clinical examination, if the person is showing enough signs, in enough places. Your dad has got limb weakness and limb atrophy along with diagram weakness, so he has several areas of nerve damage.

I do hope it turns out to be something else

Can you talk to your dads doctor with his permission and ask him the questions you have? Why he thinks it's ALS?
Aly

 

[Mir1013]

Well here lies the problem, he does not not have a doctor at this moment. His doctor moved to another state. He has an appointment in December with another doctor but his Appointment to get the DPS in is in a week. I guess my question is do the symptoms he I having with the speech and the clearing of the throat sign of it being lower motor neuron damage and do they also have to have three signs as lower as well or just three in lower and upper? Not sure if im making sense. Also to my knowledge I did not think symptoms came one day and were better the next. Also think its strange his legs are stronger. I thought once they were bad they only got worse.

 

[Alyoop]

Difficult situation for you, I can see that.

Maybe think of it this way........your Dad is being treated symtomaticaly....hence the DPS. He does have these weaknesses and he clearly has a very " go to " doctor to be able to look at this solution for your dad. It's so very new!

Whatever he has, whether it's ALS or not, is causing some pretty alarming issues. Each day at a time, regardless of what it might or might not be. That's all any of us can really do.

AlS does not always stick to a set of steadfast rules, like any illness, each person is very different.

I do wish you the best.

 

[Mir1013]

Yes I know the disease is never the same for each person. It can go fast it can go slow and it comes out differently in every person. As of now we take it a day at a time. He has an appointment on Wednesday with a doctor so hopefully we will get some more information.
Thank you for the comments!

 

[Alyoop]

I hope his appointment on Wednesday goes well
Best wishes to you and your family.

 

[notme]

Has he had an EMG yet? Loss of use and hand weakness and atrophy, with atrophy in legs and weakness in diaphragm doesn't sound good.

With bulbar issues, yes, voice issues can change.

Leg weakness early can, too once paralysis hits, I've never seen it reverse, but, early, people have good and bad days.

He needs a neuromuscular specialist, though. I believe.

 

[Karin Bolette Sonne]

You should know that when ALS affects your breathing and lung function it is because of a lack of oxygen and an increase of carbon dioxide in the lungs causing low red blood cells. Apart from difficulty breathing because of low SO2 it also cause dizziness, headaches and coughing. Deep coughing is necessary to help keep the lungs clear. While smoking the wackie tabacco may help to relax or to get doing something in the long run it is causing your lungs to work harder just like regular cigarretts, using up HO2 and will increase your headaches and dizziness which in turn will cause one to fall easier. I`m not opposed to the stuff just don`t think it is useful for ALS. Karin

 

[Mir1013]

Yes he had an EMG, results left his diagnoses unknown. His walking was very bad he felt a wheelchair was not far in his future. He started the rilutek and THC the same day and he walks better now. It's not bad and good days. He just said his legs feel stronger. He does not smoke the " wacky tobacco".

 

[notme]

There are many that believe THC helps them greatly with appetite and with spasms. I'm glad it's making him feel stronger.

Edit to add if his FCV is 43%, he should likely be on a bipap to aid in his breathing, and it will have the added benefit of increasing his energy.