Mom Symptoms

[quintok555]

Hi,

My mother started feeling weakness on her right leg 7 months ago and now her leg is really weak and its spreading to her left leg. She is currently using a walker now and is very limited in her walking. At night she can't sleep well, because she gets these tingling feeling on her right leg that keeps her awake. My mother is not experiencing any pain symptoms and so far her arms and speech are normal. As for tests, she had 3 MRIs and 1 EMG, one MRI says she has mild lumbar stenosis but her EMG suggest she has MND. The neurologist referred her to a ALS specialist and we have an appointment this Friday. I am really worried that she might have ALS but I am hoping for some good news. Please let me know if these are similar symptoms of ALS or something else. The hard part is my mother does not know what is ALS and if there is bad news on Friday, it will be a very emotional time. Also, after all these tests done and submitted to the ALS specialist do you think my mother will get a diagnosis the same day or he will do more test?

Thanks,

 

[Atsugi]

Re: Mom Symptons

Well, "feeling weakness" is not really ALS, neither is the tingling feeling. But BEING weak and watching it spread over the course of 7 months is possibly some kind of MND. There are other things to consider, though. Plus, of course, the EMG needs to be interpreted by an expert.

Possibly the ALS specialist will conduct his own EMG. I'm thinking the odds are that you won't get a dx on the same day.

If mom doesn't understand ALS, I wouldn't bring it up now. There's no sense upsetting her, because it isn't ALS until it's ALS.

If you choose to follow my advice, I know it will be hard to hold it inside. But you gotta do what ya gotta do, you know?

I wish you luck and hope someone smarter will come along to give you a better answer. Also, remember it is probably something else. Good luck.

 

[quintok555]

Re: Mom Symptons

Hi, thanks for the reply. We met with the dr today and you were right we didn't get a decision today and the dr wants to have another EMG. The next appointment is next week and after the EMG he will probably give his diagnosis, it will be stressful week. Hoping for the best for now.

 

[lgelb]

Re: Mom Symptons

Hi, Quinto, hope the news is something more treatable but this would be a good week before the appointment to reassure her repeatedly that whatever it is, you will be with her and deal with it as a family.

Best,
Laurie

 

[quintok555]

Re: Mom Symptons

Hi,

We did our follow up today with another EMG and unfortunately the specialist (Dr. Mitsumoto) diagnosed my mother with MND/ALS. Right now my emotion is high knowing that I might lose my mother within 5 years. I explained to my mother what is MND & that there is no cure but I did not tell her the statistic on life expectancy, is it wrong not tell her? I only told her that everyone's progression is different and by taking medication it can slow it down. Does it feel like I am giving her false hope or is it giving her a positive attitude?

Tomorrow I will need to sit down and do a lot of planning. Does anyone recommend what I should do first? I have some questions I hope someone can help: My mother is 67 and she has private insurance because she is on leave of absence, but now I will need to sign her up for Medicare, do you know how much Riluzole cost after Medicare or Private insurance? I have read online that it is an expensive medication and it only prolong your life by 3 months. The Doctor also recommended to take B12 supplements, he suggested to intake by powder form or by injection? has anyone tried B12 supplement by injection? and does it feel it is working?

He also mention a potential new drug that might be released next year, Edaravone, has anyone heard of this drug? I read some information online and hopefully we will have access to it sometime next year.

Sorry, I have so many things in my head now and there is not enough time. Thank you all for taking the time to read this and hope to hear from someone soon.

Thanks,

 

[Nikki J]

Re: Mom Symptons

Very sorry.
Re riluzole it depends on your plan how much is paid. You can research different plans on medicare dot gov. If you do traditional medicare with a supplement then you pick a part d for drugs

Re vit b 12 I expect it is injectable methylcobalamin. You can find threads here on it. Used early in Japan it was found to extend survival

We are all hoping for Edaravone/ Radicut to be approved in the US without needing further trials The fda decides by June 16.

Everything you said to your mom is true. Will she not research/ ask more after the shock wears off? Btw riluzole in supposed to extend life by ten percent. If you are a slow progressor that is a bigger deal than if you are fast.

Your mom has a great doctor

Now take a deep breath. Give yourself and your mom a few days to absorb this. Lots of information here when you are ready

 

[affected]

I'm so sorry for you mum's diagnosis, and for what it means for all of you.

You don't have to work everything out today. Yes you want to be proactive, but also be kind to yourself, this is a big shock to absorb.

In the general forum section there is a sticky for being newly diagnosed (both for PALS and CALS) and one on anticipatory planning. They will both be a help to you.

 

[quintok555]

Thanks for helping with my questions, i am sure I will have more questions. Regarding the B12 injection, I did not understand why the Dr would not write a prescription for me if he suggested alternatives. Do you know what is the best way to get 25 MG of B12 for injections? and does it cost a lot?

Thanks,

 

[Nikki J]

You do need a prescription for the methylcobalamin injections. Maybe he thinks other routes of administration work but I do not think there is research. Call his nurse and clarify. Prices vary. Mine is 133 a month. You get it from a compounding pharmacy. My doctor wrote the prescription and recommended the pharmacy. It was the third one they had tried and significantly cheaper than the first 2 so you might want to shop around

 

[patrick123]

So sorry to hear of your mother Dx. ALS has no rules of progression. I'm over 4 years last sept. We were told to get my affairs in order. But before you do that, take a few weeks to absorb everything or your head explode. We did everything so fast. I think for it made it worse. Get on SSDI and Medicare ASAP. ALS is considered a TERA case, that you only have 6 months. Instead of the normal 2 years. You want a good plan. And a good supplementary plan. The cost of have ALS is about $200,000 a year. Medicare only covers 80 percent. My supplemental plan is part G I have $150 deductible and the rest is 100% and when you have to buy powered wheelchair the cost $25,000 you out of pocket could get very high without a supplemental. Also contact your local ALSA they will help you though all of this.

Patrick

 

[Nikki J]

Since your mom is 67 SSDI and the wait should not apply she should be able to start receiving benefits for ss and medicare soon after things are processed but the rest of Patrick's advice is gold

 

[KimT]

Since your mother is on leave of absence and has private medical insurance, you will need to transition to a Medicare supplement plan (Plan F is the richest for those over 65.) She won't have a yearly deductible and it will pick up the 20% of everything Medicare doesn't cover. It is critical that she talk with her employer about transitioning off her existing medical, about any unpaid sick leave/short term disability and long term disability her company offers. Also, if she has life insurance, keep paying the premiums and make sure anything portable from work is kept.

My private insurance paid for all but $10 a month for Riluzole but once she converts to the supplement, she will have to choose a Drug Plan as well as the supplement. Drug plans are very specific to your location in what they cover and how much. Some States are much better, rate and coverage wise, than others. I'm in Florida and ended up with Florida Blue (BCBS) supplement and Silverscript Plan D Drug Insurance. Each company will let you plug in specific drugs and give estimates on what they will pay toward the drug.

The ONE piece of advice I think you should prioritize is to make sure you understand her employer's benefits before severing the relationship.

Your mother is blessed to have someone helping her figure all this out. The stickies have a lot of info. Print them out but don't try to do everything at once.

 

[lgelb]

Again, everyone looking at supplements should start with looking at Medicare Advantage plans if only since the drugs are included, you end up w/ 1 plan instead of 2 to coordinate. Plus, if Medicare is paying for 80% of most things, any issues about coverage end up in its dead letter office. Dealing with a private entity with a stock price/market share to protect does have its benefits.

If you look at a drug plan+ supplement premiums + exclusions, an MA plan can be a considerably better deal. Availability in every state differs but you can look both ways at the CMS site for your zip code and drugs.