Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Posted by allegro @allegro, Apr 27, 2019

WE ARE DEALING WITH MY HUSBANDS ALS AND IT S DEVASTATING…I AM FIGHTING DEPRESSION AND PANIC ATTACKS,,,CAN ANYONE OFFER SOME HOPE????? JAN

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@hopeful33250

Hello @722jo

I can so understand your concern about your husband's symptoms. It seems that neurological symptoms can be challenging to pinpoint. When my symptoms first began (in my late 40s) one well-respected neurologist thought it was the early stages of MS while another thought it was the early stages of PD. They told me they might not know for sure until the symptoms worsen. As you can imagine, that was not very comforting or helpful to me. About 12 years later the consensus was PD.

As a nurse, you are probably well versed in talking with doctors. If I could make suggestions for your first appointment, however, I would suggest bringing a list of your husband's symptoms, as well as the times when the symptoms seem to be worse. (For example, at the end of the day.) Are there any activities that seem to make the symptoms worse?

Is your husband sleeping well? Is he able to walk without assistance?

As Colleen @collenyoung) has suggested, keep trying to get him an earlier appointment. Have you asked to be put on a waitlist for an earlier appointment if there are cancellations?

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First of all thank you so much for responding, I forgot to add his General practitioner told him he doesnt think its MS OR PARKINSONS but cant rule out ALS. (MY husband specifically asked him. Yes I'm constantly asking him about his symptoms and he frequently gets angry when I do. If you look it up the twitching is the key, but then he has all the other classic s/s of ALS. He is on all the waiting list especially here in IN. Some of the Neurologist here dont see ALS. When he first wakes up the symptoms are worse and at night but the twitching never stops and moves around, its the neurons attacking the muscles. Yes Ive started a list, because I know as a heart patient and diabetic you can forget things when your at your Dr. apt. I' m starting first thing in the am to call more Neurologists. Again, thank you so much for listening. I hope you are doing well.

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@722jo

First of all thank you so much for responding, I forgot to add his General practitioner told him he doesnt think its MS OR PARKINSONS but cant rule out ALS. (MY husband specifically asked him. Yes I'm constantly asking him about his symptoms and he frequently gets angry when I do. If you look it up the twitching is the key, but then he has all the other classic s/s of ALS. He is on all the waiting list especially here in IN. Some of the Neurologist here dont see ALS. When he first wakes up the symptoms are worse and at night but the twitching never stops and moves around, its the neurons attacking the muscles. Yes Ive started a list, because I know as a heart patient and diabetic you can forget things when your at your Dr. apt. I' m starting first thing in the am to call more Neurologists. Again, thank you so much for listening. I hope you are doing well.

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Hello @722jo

As I thought, you are very well prepared for his appointment and I'm glad to hear that you are persistent in finding a neurologist who can see him sooner. It sounds as if you are feeling fairly certain about the ALS diagnosis.

Does he currently have any problems with swallowing?
What about his speech?

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Hi I need help with some questions My husband at the age 65 started with his hand starting to shake went he would use them. At rest they were good. The Neurologist said Essential Tremors. 5-22 they put him on Primidone 150 mg 6 a day that was not helping so was going to add Gabapentin 300 mg. Rick said no to any more meds he didn't feel good and did not help. He went back 7-22 he had lost so much of the shoulder girdle of his muscles . He was having a hard times making his arms and hands work from weakness. Did a EMG showed some weakness . The Mri , Ultra sounds and blood test all came back good. 10-22 now they are treating him thinking its ALS he is taking riluzole 50 MG tablet. His legs muscles are good , balance and walking are all fine. Does not fall or stumble. His arms are very weak but work over head . But not while he is in the shower. He cant reach his head or pick them up above his shoulders. Not sure why wondering if anyone else had that? They said it should not come and go like that Als is always there. His are triceps and biceps are the ones that are the ones that are failing. The doctors aren't sure why his symptoms are so different and they don't meet the criteria for ALS. This all so scary for me and read everything I can . Any help or answers on this strange disease I wold appreciate. Thanks

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@722jo

My 62 y/o husband was just to his Dr. for legs arms feeling heavy like he ran a Marathon. Muscle twitches in his arms, hands, back. The 3 possibilities the Dr. mentioned 3 possibilities, ALS, MS, Parkinsons, but said he didnt think Parkinsons because the hand shakes and my husbands hands/fingers didnt they had twitching. He cant even get into a Neurologist until end of January. Is there anyone out there with experience with ALS who can tell me the beginning symptoms their loved one experienced? This is a long wait and we are devastated.

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I'm so sorry 722jo I agree it is so scary not knowing. My husband 66 was told he might have ALS 2 months ago. There are hundreds of questions and hardly any answers. Started with his hands shaking when using them the doctor thought Essential Tremors. But after a few months he had major muscle loss in his arms and shoulders no where else. Now they think ALS I have read so much but really no answers that are for sure, The unknowing is terrible on the heart and nerves. We have been married 48 years so it has to be some other type of neuron disease. Hope you get some good answers soon. Glad I found this forum where I can see what other people think and say my hubby sure doesn't want to talk about it.

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@gizzmo

I'm so sorry 722jo I agree it is so scary not knowing. My husband 66 was told he might have ALS 2 months ago. There are hundreds of questions and hardly any answers. Started with his hands shaking when using them the doctor thought Essential Tremors. But after a few months he had major muscle loss in his arms and shoulders no where else. Now they think ALS I have read so much but really no answers that are for sure, The unknowing is terrible on the heart and nerves. We have been married 48 years so it has to be some other type of neuron disease. Hope you get some good answers soon. Glad I found this forum where I can see what other people think and say my hubby sure doesn't want to talk about it.

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Hello @gizzmo and welcome to Mayo Connect. I can understand the concern you have for your husband. Symptoms that don't fit into a neat diagnostic box are troubling for both the patient and the medical team. I'm sorry to hear that you are in this situation.

I suppose you have considered getting a second opinion. If not, this might be a good idea, given the fact that meds have not worked for your husband's symptoms and his current medical team is at a loss as to what to do next.

Do you have a large research oriented medical center in your area? I'm thinking about a university medical school or a facility like Mayo Clinic? These types of centers are used to seeing unusual problems and as they are research oriented, they often have good success at diagnosing and treating hard-to-diagnose problems.

Have you considered a second opinion?

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Thanks Teresa for answering. Yes I think a second opinion is a good idea but my husband is not wanting to. He is being seen now at Froedtert in Milwaukee they feel its confusing how these symptoms are. But they are going to treat it like it is ALS. It can take years to get a diagnose which scares me . Wondering if anyone else have these kind of problems ? Wondering if this is how it starts ?

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@gizzmo

Hi I need help with some questions My husband at the age 65 started with his hand starting to shake went he would use them. At rest they were good. The Neurologist said Essential Tremors. 5-22 they put him on Primidone 150 mg 6 a day that was not helping so was going to add Gabapentin 300 mg. Rick said no to any more meds he didn't feel good and did not help. He went back 7-22 he had lost so much of the shoulder girdle of his muscles . He was having a hard times making his arms and hands work from weakness. Did a EMG showed some weakness . The Mri , Ultra sounds and blood test all came back good. 10-22 now they are treating him thinking its ALS he is taking riluzole 50 MG tablet. His legs muscles are good , balance and walking are all fine. Does not fall or stumble. His arms are very weak but work over head . But not while he is in the shower. He cant reach his head or pick them up above his shoulders. Not sure why wondering if anyone else had that? They said it should not come and go like that Als is always there. His are triceps and biceps are the ones that are the ones that are failing. The doctors aren't sure why his symptoms are so different and they don't meet the criteria for ALS. This all so scary for me and read everything I can . Any help or answers on this strange disease I wold appreciate. Thanks

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I'd like to add my welcome @gizzmo and help you connect with other members like @722jo @allegro @julesa @bethclardy22 @laurahquayle11 along with @hopeful33250.

You may also be interested in this related discussion that @gcranor started with helpful posts from @jenniferhunter @rivermaya34 and @larryh123

– Neuromuscular Testing and Waiting for ALS confirmation https://connect.mayoclinic.org/discussion/neuromuscular-testing/

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@gizzmo

Hi I need help with some questions My husband at the age 65 started with his hand starting to shake went he would use them. At rest they were good. The Neurologist said Essential Tremors. 5-22 they put him on Primidone 150 mg 6 a day that was not helping so was going to add Gabapentin 300 mg. Rick said no to any more meds he didn't feel good and did not help. He went back 7-22 he had lost so much of the shoulder girdle of his muscles . He was having a hard times making his arms and hands work from weakness. Did a EMG showed some weakness . The Mri , Ultra sounds and blood test all came back good. 10-22 now they are treating him thinking its ALS he is taking riluzole 50 MG tablet. His legs muscles are good , balance and walking are all fine. Does not fall or stumble. His arms are very weak but work over head . But not while he is in the shower. He cant reach his head or pick them up above his shoulders. Not sure why wondering if anyone else had that? They said it should not come and go like that Als is always there. His are triceps and biceps are the ones that are the ones that are failing. The doctors aren't sure why his symptoms are so different and they don't meet the criteria for ALS. This all so scary for me and read everything I can . Any help or answers on this strange disease I wold appreciate. Thanks

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@gizzmo As I read your description about muscle loss in biceps and triceps, my thoughts go toward a cervical spine issue. If there is some instability in the spine, so that the alignment changes with different body positions, it can create a situation where symptoms can be intermittent. I am a spine surgery patient, and I had the same muscle loss in biceps and triceps because of spinal cord compression because of a collapsed C5/C6 disc and bone spurs. I had 2 mm of one vertebrae slipping past the other, so that essentially made my spinal canal smaller when that happened when there wasn't any fluid space left around the spinal cord. If it was aligned well, the symptoms got better. I was seeing a physical therapist who was working on me which made it better until the next muscle spasms caused the bones to move again. You had mentioned an MRI. Was that done to look at the cervical spine or something else?

Have you consulted a spine specialist? Froedert does have some good doctors. I have taken my elderly mom to doctors in their health care system and also to a spine neurosurgeon at Aurora in Milwaukee. She didn't have surgery. It was a consult about a spine compression fracture. Spine specialists also do full spine standing X-rays and compare that to sitting or lying down X-rays to check for changes in spine alignment.

I did have a spinal fusion decompression surgery, and since then, I have gotten muscle back that I lost; not all of it, but a lot of it.

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@jenniferhunter

@gizzmo As I read your description about muscle loss in biceps and triceps, my thoughts go toward a cervical spine issue. If there is some instability in the spine, so that the alignment changes with different body positions, it can create a situation where symptoms can be intermittent. I am a spine surgery patient, and I had the same muscle loss in biceps and triceps because of spinal cord compression because of a collapsed C5/C6 disc and bone spurs. I had 2 mm of one vertebrae slipping past the other, so that essentially made my spinal canal smaller when that happened when there wasn't any fluid space left around the spinal cord. If it was aligned well, the symptoms got better. I was seeing a physical therapist who was working on me which made it better until the next muscle spasms caused the bones to move again. You had mentioned an MRI. Was that done to look at the cervical spine or something else?

Have you consulted a spine specialist? Froedert does have some good doctors. I have taken my elderly mom to doctors in their health care system and also to a spine neurosurgeon at Aurora in Milwaukee. She didn't have surgery. It was a consult about a spine compression fracture. Spine specialists also do full spine standing X-rays and compare that to sitting or lying down X-rays to check for changes in spine alignment.

I did have a spinal fusion decompression surgery, and since then, I have gotten muscle back that I lost; not all of it, but a lot of it.

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Hi Thanks for answering I will definitely check out a spine specialist. There is so much I dont know about all of this. Yes he had a MRI CERVICAL SPINE WO CONTRAST . This one kind of stands out like it could maybe be.
C6-7: There is intervertebral disc narrowing, degeneration and desiccation.
Endplate marrow changes are noted. 2 to 3 mm broad-based disc bulge is
noted. Disc bulge lateralization is present bilaterally. There is moderate
RIGHT and moderate to prominent LEFT neural foraminal stenosis. I will a couple others that maybe you might know something that looks funny.

C4-5: Mild eccentric broad-based disc bulge with superimposed osteophyte
disc complex at C4-C5 level. This results in moderate right-sided neural
foraminal stenosis. The LEFT neural foramen is patent.

C5-6: Small eccentric disc protrusion paracentral to far lateral recess and
neural foramina. These findings in addition to uncovertebral process
hypertrophy osseous ridging results in moderate right-sided neural
foraminal compromise. The LEFT neural foramen is patent. The central canal
is patent.
I'm very grateful for your help and talking to me this is all so scary and unnerving.

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@colleenyoung

I'd like to add my welcome @gizzmo and help you connect with other members like @722jo @allegro @julesa @bethclardy22 @laurahquayle11 along with @hopeful33250.

You may also be interested in this related discussion that @gcranor started with helpful posts from @jenniferhunter @rivermaya34 and @larryh123

– Neuromuscular Testing and Waiting for ALS confirmation https://connect.mayoclinic.org/discussion/neuromuscular-testing/

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Thank you Colleen I will definitely check those discussions out. Anything that I can read and find some answers and help is great. So many questions and how to deal with things I have no clue on. Thanks

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