Many Questions

[mybrother]

My brother has been referred to a neurologist and is undergoing testing. He has had a Cat scan and an MMR of the brain, all were found negative for any disease. He has had progressive muscle loss in is left leg approx 7months and now in his left hand. I have noticed some loss of function in his right hand also within the last week. He has muscle twitching in his arm and complains of muscle twitching in his legs. He walks with a cane. His Dr. has ordered a Pulmonary function test and an EMG for next week. He is 49 years old. I am hoping for the best but am very concerned. I need to know what I should do ? I will go with him next week when he has his EMG test. Do you think his Dr. will diagnosis at this time. If so should I ask him to prescribe Lithium?

 

[sharonca]

My visit with a neurologist at UCLA for EMG was in November. I went by myself because I could still drive fine and I didn't see the issue of going alone. So I had to wait another five weeks for a diagnosis that I could have had that day. A doctor will not give a serious diagnosis to someone who is alone - that's what he said five weeks later. He only asked me that day in November if I had driven in alone - just casual conversation. And the other issue is that if the doctor is giving information on things to do or not do it is hard to remember and nice to have someone along to help with that. Good luck at the appt.

Sharonca

 

[brooksea]

It is so wonderful that you are going to be there to support your brother!

I would just try to make sure the EMG is done thoroughly.

If he is diagnosed with ALS, then by all means I would discuss Lithium, but you should have information to back up the request- unless he is going to an ALS Clinic, then they should already know of the Lithium trial and treatment.

As Sharonca said, going along with your bro will help y'all sort out the info the doc gives you.

Please keep us posted on the results of your brother's visit with the Neuro.

Wish y'all well!

 

[juliesmile]

Unprepared for DX

My husband was diagnosed following the EMG. We didn't think it would happen so fast. I figured the Dr. would say he needed to do more tests, or see how things developed, so we were totally unprepared for a Dx that very day. It was quite a shocker. Please be there with him. Hope for the best but prepare for the worst.

 

[mybrother]

My brother was diagnosed with ALS on his 49th birthday. I asked his DR. about Lithium and he said he would prescibe it to him. A week later he said he needed to go to a speacialty clinic. Since that he has not heard back. He has since lost his job and has no insurance. He applied for social security disability but that will take months. What can we do?

 

[patricia1]

Sorry about you brother With a DX of ALS he should get Disability much faster and call medicare as well.

Good luck Pat

 

[trying to stay positive]

I am so sorry about your brother's DX. My husband was DX last August. I'm sure there will be lots of helpful suggestions coming soon, as the people on this forum are wonderful. I do believe that the MDA has clinics at no charge available. Is your brother registered with MDA and ALSA? If not, do that ASAP. They will be able to help and direct you. I'm sure you both have alot of questions. They will help with that too, as will the people here on the forum. I wish the best for both you and your brother.

Linda

 

[cajuntexusa]

So sorry hear about your brother. My husband was diagnosed back in March 08. It was a terrible shock. He lost his job too so I know what you are going through. We applied for SSDI and had to contact Senator Alexander to push it through. It normally takes a few months to go into affect.

Take care,

 

[mybrother]

My brother has an appointment next week at an MDA clinic in the University of Iowa Hospitals. I checked their website and they said at your first visit you are seen in the neurology department. Does that mean he has to be retested all over again? Does anyone know anything about the first visit and what is involved. We were hoping that he would be started on riluteck and lithium at this time. Also someone suggested to us about seeing a Homeopathic Dr. regarding herbs and supplements, any info on that would also be helpfull.


Thank You All,
Mary

 

[fiddleplayer51]

Mary,
I suspect the MDA neurology dept. will want to redo the EMG. That was what happened with my PALS husband prior to being referred to the ALS clinic in Charlottesville VA.
He had an NCV and EMG 3/28 of this year done by a neurologist we were referred to here in our home town. The neurologist diagnosed him on the spot with bulbar-onset ALS. That neurologist in turn insisted we go for a second opinion and we chose to be referred to the ALS clinic in Charlottesville. The EMG was repeated at the UVA neurology dept. and the initial diagnosis was verified. My husband was given an Rx for Rilutek right away, although he chose not to take it, and was referred to the ALS clinic.
It's great you can be there for your brother. He's lucky to have such a loving sister.
Best wishes and all the best in the days and weeks ahead. Keep us updated as you get more info.
Jane

 

[swi71]

Mary--
Sorry to hear about your brother, but keep your chin up. My husband was diagnosed in 2002. Just a note to what the others wrote. Bring everything you already have with you. Gerald has now been seen by 5 different neurologists and several other specialists. Every time we were asked to bring his records and the tests that had already been done. Sometimes they do redo them, but they also compare them.
God bless.
Sharon

 

[crystalkk]

Mary,

Why don't you call the MDA clinic and explain the situation, they will usually pick up the bill. Ask what you need to bring and if they are going to repeat the tests, so you can get and estimate of how long you are going to be there. Also I would ask if you are going to meet with a social worker, she might be able to help with the SSD and medicare part.
Your brother is very lucky to have you as a sister.

 

[JAMEYER]

I have just joined the group so forgive me if I am not getting the hang of this straight away. Just wanted to share information. I have just spend a week with my younger brother (he is 50) who lives interstate. He was diagnoised in February. First neuro said yes for MND, second said no then third said yes. He suffered with ross river fever for many years and recently (meaning last few years) had shingles. Talking to several other MND suffers - many had also experienced virus's. He has a team of people assisting him in addition to family. Natrupath, Hypnotist, Dietitian and Hand therapist. He is taking riluzole, lithicab daily as well as live stem cells from Germany. Only organic foods consumed and huge quantities of supplements which are checked daily by the natrupath. He has lost a high percentage of use of arms and hands but is staying strong. All toxic items have been excluding from his home, all fillings removed.
Eric Edney's book "Eric is a Winner" is worth a read. I have lots more to share but will see if I can get this info into the forum first.

 

[CindyM]

I am sorry to hear about your brother. Sounds like he is hopeful that he can combat his disease. Be careful of Eric, though. His sole purpose seems to be to make money off desperate people. You will read it here many times. There is no known cure for ALS or MND, as of this date. You might also want to visit our "scam watch" section before spending any more money.

 

[brooksea]

Mary,

Has your brother had his appointment yet?

Hope he didn't lose his job due to ALS. I think he would have recourse. If not, he needs to check into Social Security Supplemental Security Income(SSI) as well as SS Disability and Medicaid and Medicare.

He will be approved for SSDI within 30 days, as ALS is on their TERI list (unless the people you are dealing with are idiots) and Medicare will start 5 months later and first SSDI payment will begin the sixth month. This is how it generally works, although I've heard different stories varying by state. Y'all need to go to the SS site and read up on TERI and educate yourselves, so you will be prepared to deal with the SS Office.

Your brother may be tested again. My husband was not, as the original Neuro is well renowned and did a very thorough EMG, etc...

MDA payed for a visit to the ALS Clinic when my husband's insurance ran out and Medicare had not kicked in yet.

Please let us know how you and your brother are doing.

If you would like to see what other PALS are taking, whether it be prescription drugs or supplements, you may want to go to the "Patients Like Me" web site. You will need to register to access info, but you can see patients' profiles that list symptoms and lots more.

Please be careful of those touting special "cures." Some things can do more harm than good, so always do your research on any supplement or treatment that is offered by anyone that believes it will help your brother.

Good luck to y'all!