My Brother newly diagnosed

[flsister]

Hello, My brother is 67 and has been so active till the last year. He had back problems and some surgery and that helped his back pain. However, He still swings his hp when he walks, and said it was because of a paralyzed big toe. Myself and his Finance have been trying to get him to go to a doctor, a Neurologist. He went on Thursday and the Neurologist had him back Friday to do the nerve tests.

He left knowing that the Neurologist was very sure it was ALS. He did refer him to the Mayo clinic in Jacksonville, FL. That doctor called and said they would review the results of his tests and get back with him for an appointment.

My brother has worked out at the gym M-F since retirement, and on weekends all of his life. He is in great shape, until the past year.

I of course have been researching what I can. My sister in law (future) thinks he doesn't know what is coming. I think he does, but is not thinking about it until the 2nd opinion and where is in the phase of the disease.

My husband lost his battle with cancer last year. My brother has been my rock and I never ever thought I would loose him and ALS was never even a thought of what his walking problems could be.

My Questions would be when he goes to Mayo, would they know that day, or would it be a battery of tests and a week later get their diagnosis?

ALso, obviously, any thoughts, guidance would be much appreciated.

 

[MaxEidswick]

>He did refer him to the Mayo clinic in Jacksonville, FL. That doctor called and said they would review the results of his tests and get back with him for an appointment.

good, try not to make guessses until then!

 

[Nikki J]

Mayo Jax is a great place to go. Whether they will confirm the diagnosis that day will depend on how he presents and what he has had done already. Traditionally tests needed would include a brain MRI the NCS/EMG the clinical exam and a ton of bloodwork some of which takes several weeks to come back. Sometimes a spinal tap. But it can be pretty clear from the EMG and exam that it is almost certainly ALS sometimes. And it has happened here that someone is told ALS by the initial neurologist and the neuromuscular specialist gives a different diagnosis. Not often but it happens so until the diagnosis is given by a neuromuscular doctor there is hope for another answer.

 

[KatB]

Flsister, and we are, only 30 minutes away from you. I went to Jacksonville, Mayo. They respond quickly....my appointment was scheduled within 10 days from the initial appointment with my local neurologist and went there in 3 weeks. I had all of the other tests before going except for the EMG. That was done there, we met Dr Boylan they already had the EMG scheduled for the following morning. Later the day of the EMG we met again with Dr B., all questions were answered. What a great staff! Any tests he has not done can/will be scheduled at Mayo. He is in excellent hands.

 

[flsister]

Thank you both. I have heard wonderful things about Mayo in Jax as well. I know the hospitals with specialties are so advanced. My husband went to Moffit in Tampa and they were wonderful.

They only did the electric needle test on his muscles last week. The Doctor was sure with the results it was ALS, but made the appointment with Mayo. He said, I could always be wrong and it is something else. I thought that was good of the Dr here.

I had dinner with my brother and finance last night. THey are doing ok, just no talking about it. I understand that, and until he gets the 2nd diagnosis and has his questions answered it will be like that.

I am hoping it will be a call this week for an appointment. I am also thinking to myself on how to care for him. I know his fiancee will be all over that, but she will need help too.

 

[KatB]

MDA.org
The banner on the left-"learn about muscle disease", select ALS, half way down on the right is "Publications"
Select the first one "MDA/ALS Cargivers guide"
Much more on this site too. I hope it's helpful.
I did a lot or research before I went to Jax, it was helpful in planning my questions for Dr B.

 

[nebrhahe53]

There are a number of diseases, some neuromuscular, that can mimic ALS. There is really no test for ALS, it is a diagnosis of omission . If you don't have anything else, then it is ALS.

 

[GregK]

> it is a diagnosis of omission
Or, possibly, elimination.

 

[flsister]

Flsister, and we are, only 30 minutes away from you. I went to Jacksonville, Mayo. They respond quickly....my appointment was scheduled within 10 days from the initial appointment with my local neurologist and went there in 3 weeks. I had all of the other tests before going except for the EMG. That was done there, we met Dr Boylan they already had the EMG scheduled for the following morning. Later the day of the EMG we met again with Dr B., all questions were answered. What a great staff! Any tests he has not done can/will be scheduled at Mayo. He is in excellent hands.

hello,

My brother now has an appoinment at Mayo in Jax for 6/9 with Dr Boynton. They have not scheduled tests yet. However, he had tests here in Ocala on his nerves/muscles. Not sure what it is called, but the test showed muscle/nerve loss of various points on his body. Especially his right leg. He Big toe is paralyzed, and his ankle on that side is very weak.

I also called and spoke with David Ray from the Paralyzed Veterans. He was so very helpful and sent me all the forms to get started on his claim with the VA. We had no idea they would be so helpful.

Thank you all for the help and guidance.

 

[KimT]

hello,

My brother now has an appoinment at Mayo in Jax for 6/9 with Dr Boynton. They have not scheduled tests yet. However, he had tests here in Ocala on his nerves/muscles. Not sure what it is called, but the test showed muscle/nerve loss of various points on his body. Especially his right leg. He Big toe is paralyzed, and his ankle on that side is very weak.

I also called and spoke with David Ray from the Paralyzed Veterans. He was so very helpful and sent me all the forms to get started on his claim with the VA. We had no idea they would be so helpful.

Thank you all for the help and guidance.

Dr. Boylan, at Mayo in Jax, travels the world giving talks on NMD....he is an expert in ALS. Your brother is in good hands. He may want to schedule another EMG and nerve conduction study along with specialized blood work they do there. He did with me. Boylan does not do the EMGs/nerve conduction studies himself. He has other neurologists do them. He will do the physical exam, ask questions, review prior records and interpret the EMGs.

You're about an hour from me. I live in Daytona Beach.

 

[flsister]

Thanks. He seems to be in a good place in his head at the moment. He is waiting till he see Dr Boynton. He has resigned himself to the diagnosis, but wants to know where he is on the journey. I don't think he knows what might happen down the road, other than being in a wheel chair. He does not do internet or ask questions. He had worked out at the gym since he was a kid and still does today. He goes to work out with weights 5 out of 7 days, which I am hoping will help him have his functionality more. He can't do the treadmill anymore, as his balanc is really bad.

 

[MaxEidswick]

>He seems to be in a good place in his head at the moment. He is waiting till he see Dr Boynton. He has resigned himself to the diagnosis, but wants to know where he is on the journey.

------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to

friends and family, too.

 

[GregK]

> He had worked out at the gym since he was a kid and still does today.
> He goes to work out with weights 5 out of 7 days,

Working out is good.
Working out to the point of exhaustion or even muscle strain is very, very bad. Recommend moderation.

 

[affected]

I'm afraid working out with weights is more likely to do harm than good. I know it seems it would help him.

He needs to carefully review his workout routine and examine how he feels as he does the exercises. Anything that leaves him feeling at all fatigued needs to be cut back - lower weights or far less repetition. Resistance work is especially bad as it causes micro muscle tears and if that muscle is not receiving full nerve impulse it won't be able to recover and repair those tears (which is what body builders use to build muscles) and so the muscle will weaken and break down faster.

The videos Max recommends are a great starting point to understand the basics of this disease.

 

[cheerleader]

Flsister, Tillie is so right. The most important exercises he can do are range of motion. The weights will not help him keep functionality. For normal people weights build up- for ALS patients it can cause further decline. ALS does not fit everything we know about exercise, weight control, etc. he needs to keep his weight up, can eat all those normally no no's to help- ie, ice cream, butter. It IS a strange disease!