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

[jimercat]

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 dxd 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]

My husband was dx 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.

[jimercat]

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!

[JAMEYER]

Thanks for the info on that book - I must admit I was more interested in the scope of ideas rather than the specific details. I have just finished reading an inspiration book called Love Has No Limits written by Tania Hayes (Aussie), her fiance had a massive brain tumor in his 20's just before they got married. Not MND related but Inspirational because he went through more than 20 operations and not too many people thought he would survive. I have been working in television media - community services for over 30 years and have seen many, many miracles. SHARE THE CARE TOGETHER WE WILL FIND THE STRENGTH.

[mybrother]

My brother was again diagnosed in Iowa City. There was no doubt in their diagnosis. He had no testing none. They suggested psychologicical counseling for the family. He is taking it Rilicuk and Lithium. He did loose his job. He has no income. We are setting up fund raiser's for him. His right side is starting with fasuculations. He has AFO braces for his legs , but does not no were to find socks to go up to his knees?

Thank You All,
Mary

[fiddleplayer51]

Mary,
I am so sorry for this news. When you say "psycological counseling for the family", do you mean your whole family or does he have a family?
What a shame to get this diagnosis on his birthday.
I will keep you all close in my heart and thoughts in these next days and weeks.
Keep us posted about your situation.
I wish you courage and strength for the time ahead.
Jane

[mybrother]

Dear Jane,
The Doctor's in Iowa City feels the whole family needs counseling for what is going to happen. My brother Rick has a wife and one daughter. Both are in severe depression and possibly in denial. Our family is all in the same area. I have a sister and another brother. We just lost our father 2 years ago to a stroke. My mother is " sick". We are doing the best we can do help my brother. I appreciate all the help and comforting words I get from this Web Site. Keep In Touch!!!

[Al]

Hi Mary. Sorry about your brother. I don't know if you can get them down there but I wear Executive Length socks made by MacGregor's. It's a Toronto company but may sell to some of the better stores there. They come up to the knee and are made of different fabrics and lengths.
AL.

[mybrother]

Are their any treatments out there that are expiremential that could give my brother A FIGHTING CHANCE? He is on Rilueck and Lithium it's not helping. Does anyone know of anything else that could help? He was diagnosed in June and at that time he was walking. It seems this is going very fast for him. His legs shake like he has PARKINSONS DISEASE. i know you are all suffering out there. I can't understand why there is no meaningfull research or medical studys going on. This disease has been going on since the 1930's. Where is the research? I can't believe after all these years someone has not been able to to figure out this. We need to speak out! There is no reason after all these years that someone can't find a cure for this disease.


A sister who can't give up.
Mary

[CindyM]

Hi Mary- you raise the same questions we all think about a lot around here. So much money is spent searching for cures for diseases that affect millions and we still have not found cures for them. It is discouraging to think that ALS, affecting relatively few of the world-wide population, is lower down on the list for research funds.

You are right! We need more awareness!!

[jimercat]

Mary,

look into Iplex and the struggle to get it!

http://www.alsforums.com/forum/showthread.php?t=5074&highlight=iplex

[BethU]

There is some awareness out there.

During the presidential debate last night, when asked about stem cell research, Obama mentioned that research is needed to "help find a cure for diseases like Lou Gehrig's Disease!" He mentioned another disease specifically, too, but I have forgotten which one, cause I was too busy cheering the mention of ALS.

BethU

[Zaphoon]

The first neurologist I saw practically scolded me for not bringing a family member with me. If she would have had a diagnosis for me that day, I doubt she would have given it to me, being alone. She referred me to an ALS clinic for a second opinion and they did redo the NCV and EMG that day. I brought my wife with me on that appt (it was a 3 hr drive and my legs wouldn't have held up anyway).

For those not yet dx'd, can you imagine what it would be like if you went to the neuro by yourself and received a fatal diagnosis. How in the world could you focus on the important information that would follow that kind of news? The doc is telling you what to do next and your thinking, "Oh shucks! I'm going to die! Oh shucks, I'm going to die!" You'd probably not hear anything after the words, "You have ALS."

Nope! If you think there is a chance you may be diagnosed with an NMD, bring a family member or close friend with you. You will be glad you did.:)