What Stage of ALS

[Grace1218]

my husband, 58, started 5 years ago with some problems with left foot. then developed a foot drop 2 1/2 yrs ago. Spine surgeon found cyst in the lumbar spine at L2-3 and was surgically removed Jan. 2010, with fusion, mobility improved somewhat. April 2010, had triple bypass surgery, June 2010 had anterior cervical surger at C3-4 with fusion. Since mid 2010 mobility had significantly declined, including right foot. August, 2011, upper body weakness started, very fatigued, muscles jumping all over. Using wheelchair since April, 2011. Has had spinal tap (negative), MRIs, 2 EMGs (peripheral neuropathy. ) and lung function test (50%). He is insulin dependent diabetic. Seen 4 neurologists (including specialist in NYC), who state he has no reflexes, extreme muscle atrophy, and they feel he has ALS or possibly PMA. He is totally confined. He sits, sleeps etc in his electric recliner. He weighs approx. 260 lbs. Can transfers, using a sliding board, to his electric wheelchair occasionally. Transfers to a commode, all with my assistance. Has hospital bed, but can't get comfortable, extremely difficult to even get in bed, screams in pain, legs separate (frog legs) He does have persistant cough, at times "horse", shortnwessof breath,sputum. Has hadtwiches in legs, now has them in his trunk and left arm. So far can eat fine and breathe ok. What can we expect next, what stage do you think he is in. Did the surgeries bring on the ALS? When should we consider some home care.

[ghost_writer]

ALS post surgeries is reported in some cases; the cause of ALS is not known. People with ALS progress differently, predicting progression is impossible.

Be prepared well in advance of need is the best advice I can offer. Contact your local ALSA for assistance.

I'm sorry Grace, I now see your husband did see a specialist in NYC.

[Danijela]

No reflexes points to PMA, lower motor neuron issues. If his FVC remains at 50% he can go on for a while. Is he using bi-pap? Has anyone checked his co2 and 02 levels? It is usually build up of co2 that kills people with ALS. Or an infection such as pneumonia. Coughing needs to be dealt with. Cough assist machine may help. D

[Grace1218]

his neurologist said "mostly likely diagnosis is ALS, it is possible that he has PMA" she sent him to Dr. Mitsumoto, Director of Eleanor & Lou Gehrig Center at Columbia University,NYC, who said he is likely to have progressive muscular atrophy, his FVC is 50%

[Grace1218]

No not using bipap. He says he doesn't want any breathing tubes, nor feeding tubes should he start to have difficulty. Pulmonary function test showed moderately severe restrictive lung physiology. Blood test showed Lyme, ANCA panel, GM-a, antibody SSA IgG IgA IgM and immunofixation, Rheumatoid factor, double strenght DNA, antibody CK Hepatitis C virusantibody all Normal, but his IgE level is elevated at 583m SSBis slightly elevated at 4.7 , Hepatitis B surface antibody is positive, hemoglobin A1c is 6.5 and ESR is 57. He cannot stand up at all

[HelenL]

Grace1218, you say your hubby is only 58... what is he doing during the day to keep occupied? We can always use another PALS to come on line, and whine, moan, yell, cry, laugh and give advice to each other here. Please tell him that we're all in the same boat, but you'd be surprised how much life is still to be lived.

BTW, this said from someone who was just crying with frustration 1/2 hour ago as I fell trying to get onto the commode. Hoyer lift to the rescue... We cry, then we move on.

[notgivnup]

Grace, We all are different, prepare for whats to come as soon as possible. So sorry you are going through this at all. Welcome to the forum. It sounds as though you could use the home care now. {HUG}

[skipper66]

You need home care Now! Will keep your husband and other PALS in my prayers. Kim

[notme]

Hello

If he's diagnosed with ALS--please have him file immediately for SSDI--it will be approved. Contact the ALSA and they can help with equipment. With lung values at 50%, he should be on a bi-pap. Kind of like a c-pap. Makes breathing easier and saves energy.

What did the doctor suggest at this point? It does sound like you may need help! Progression is so individual no one can really give answers. I'm sorry you're having to go through this. I know it's very difficult.

While they haven't proven that surgery can cause ALS--it is a known service related disease, if he was in the armed forces. Ask any questions you have--there is always someone here to answer.

[caldona]

Does he know that a bipap machine is easy to use and he can remove it when he wants too. I wear a face mask at night time and a nasal one during the day make sure he gets the easiest one for him I have three of them.

[Luke]

Bipap is considered non-invasive so the worst case scenario is he doesn't like it or has trouble tolerating it. Seems like it's worth a shot. I'm awaiting a pulm. consult myself to see if it will help my sleep issues. I've heard others say they get a boost of daytime energy from them, but I'll let the more experienced folks comment in detail. Good luck.

PS: Yes gang, I decided I'd stop back in here after all. If I can help field a few questions, I figure why not. I saw it's been a very rough time for the board lately and I was sorry to learn of those losess.

[cervus]

You do need extra care at home and some more equipment. A ceiling track or some type of lift will alleviate a lot of pain transferring. And the Bi-PAP will help with the breathing, especially if he has ALS. Take care of yourselves. Yasmin

[momap53]

Contact your local branch of the ALS Association. The Hudson Valley Chapter is amazing!

[lovedbygoldens]

My mom's started after the exact same cervical surgery. All of her symptoms prior to this were blamed on other issues and her profression as a hairdresser. I don't think it caused it but I sure do think it spead it up.

[Filmmaker]

hum excuse my stupid question, what is PMA?