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[KevinM]

Steve, I have been waiting for some of the experienced moderators to weigh in, so I do want to bring this to the top of the forum threads. At first glance, Dr. D did a very thorough job in testing multiple muscle groups. Your diagnosis is complicated because of the neuropathy. There are also clinical ways of confirming foot drop beyond your two stumbles while wearing flip flops that haven’t occurred since then.

I will say that based on his findings that there are some concerning primarily right sided abnormalities, but as he said he can’t totally rule out ulnar neuropathy. The second opinion at Mayo will provide more answers.

Also, don’t worry too much about taking Riluzole on an empty stomach. I usually wait a couple hours after eating in the morning and before bed. As my neurologist said, just take it even if you don’t do exactly as described.

 

[affected]

EMG are certainly not my forte. It could be that you have a neuropathy as well as they are quite common. I'll just help bump.

 

[Nikki J]

Hi your case is complicated as you know. The emg has a lot of things that look like ALS but you have the peripheral neuropathy signs too. There is of course no rule you can’t have multiple issues. I am really glad you are going to Mayo because they will figure it out. When is your appointment ?

 

[Smjacobsdmd]

Thanks, I can see the report is crazy. I meet Dr. Oskarsonn on Monday, October 10 with EMG on the 11th and anothe visit with Dr.O on Wednesday, October 19.
This is different but will be able to eventually be able to react to other people’s posts? Can’t seem to do that yet.

 

[Nikki J]

I didn’t know that there was a delay for the like button. You can see it but it doesn’t take when you click it? It might kick in after one more post. Will be thinking about you on your appointment days. Make sure you read the second opinion sticky to prepare. If you cn bring someone to take notes for the Dr O appointments that should be helpful. Do please keep us posted

 

[Smjacobsdmd]

Thank you Nikki, had to wait 2 days for it to let me post a response, so may add several things as it may silence me after this. About the like button— I don’t see one to push anywhere. I hope it appears when I have posted more and I am more trusted. In the mean time I have tried to read as many appropriate threads as I can and have been so impressed with everyone and I can feel some of the personalities through the posts.

 

[Nikki J]

The posting delays are annoying and inconvenient. I wish they didn’t happen and I asked admin but apparently not avoidable sorry i also don’t know when they stop. I hope soon. I did see someone with 13 posts had liked so it is no more than that for likes. I am glad you are dipping into posts. It is a great group even though none of us want to be here

 

[Smjacobsdmd]

Thanks all for your support and advice. This will a short post since I need To keep posting to eventually be off the posting restrictions. I have been looking over some of the historical threads and have found inspiration from them. If anyone has suggestions about other sources of information should you post it here?

 

[ShiftKicker]

Not sure if you've seen this section: Resources

It's got a good few threads of information and may help you with next steps or organizing and clarification of terms, etc.

 

[Smjacobsdmd]

Thanks to all on the site for the wealth of information you have provided. I’d like to see what the thoughts are for using ALS clinic. From what I’ve garnered from reading some older threads, some like them while others consider them to be a waste of time and money. I was particularly interested in how some clinics billed each person you saw as a separate encounter with separate copayment which might add up quickly. If you do go to clinic, how often?
Sorry about posting, but I’m curious and I also need to keep posting until I’m off the probationary period. If form continues, it won’t let me post again for 48 hours.

 

[Nikki J]

Clinics are certainly different. I think they are helpful for most people at the beginning and when you need equipment and meds the people who get approvals all the time know how to submit them.

some clinics you see all the disciplines every visit. Mine isn’t like that. I have an appointment with the neurologist scheduled just like any doctor. If I need to see a pt or whatever I can ask or the doctor can say to. I know that at my clinic the pt does not bill separately. I have only ever been charged the doctor visit. I believe the clinic gets some support from the MDA ( it is an MDA clinic) before e checkin was a thing they always gave me a paper that was some kind of release for the MDA - I think it was to count the number of patients. I think some clinics might have an overall clinic charge but I would expect they know how to code it to be covered.

 

[lgelb]

In ALS, most years, you will likely surpass your deductible so visit copays are not really the issue. But it is certainly better all else being equal to look for a plan where visit fees are fixed, e.g. $15 or whatever, esp. if you have a large deductible and out of pocket limit. The latter is why using only traditional Medicare is not advised -- there is no out of pocket limit. Every PALS therefore should have a supplement or Medicare Advantage plan.

Equipment, comfort items, any outside caregivers, and supplies are a much bigger expense than office visits, however the clinic operates.

I think most of us who left clinics did so not because of cost but because of travel time/difficulty, the discomfort of blocks of visits, the frustration of the treading water mentality, and the point of diminishing return once equipment was obtained.

Some clinics offer more.

 

[MupstateNY]

Thanks for this insight, Igelb.

I'd like to share an exception to the Medicare Advantage rule you shared, though: if a person is "dual eligible" for Medicare and Medicaid, then Medicaid picks up the copays, etc., so they generally end up paying $0 for almost everything. In this case, "straight Medicare" is sufficient, and nothing is gained by replacing with a Medicare Advantage plan.

For an expensive prescription that the person will take or self-administer at home (such as tablet, liquid, capsule, self-administered injection), there is a federal program called "Extra Help" which will pick up the entire cost of the big-ticket medication. (Example: FORTEO, taken for osteoporosis, costs about $2,000 per month and should be taken for two years. With "Extra Help," it costs $0.) I think that when one applies for the government to pay the Medicare premium, if approved, then the "Extra Help" will kick in automatically.

Note that for things like hospital charges, it can be helpful to apply for financial assistance at the specific facility. Generally, this will be a percentage discount, based on income. If one qualifies for 100% discount, then if there are charges beyond Medicare and Medicaid, they will be completely covered by the Financial Assistance program.

 

[lgelb]

Medicaid-eligibles would not typically be looking at MA, so yes, I omitted that scenario.

Most PALS do not spend a lot of time in hospitals, so I omitted that part, too. And yes, those eligible for "extra help" will not typically be looking at MA, either.

The days of facility/municipality-specific assistance are largely gone, so I would never encourage someone to count on that. You will be steered into Medicaid if you qualify, or possibly to "extra help" if circumstances have changed. Or put on a payment plan if neither assistance scenario is possible.

 

[Smjacobsdmd]

Sadly, or happily, in my case it will likely amount to the American experience of taking a lifetime of work and savings and sucking them dry a bit at a time. I’m retired, married and was in excellent financial shape and I guess still am, but I don’t want to leave my widow, when it is time struggling. It is early days and I don’t feel I can begin my “post-diagnosis” time until I have my confirmation consultation at Mayo-Jax. So many changes to contemplate as the last 8 years since I retired (at 60) have been spent traveling. That was our plan, to spend a our 6 months a year on the road or the sea. We have a 51-day cruise scheduled in December that I intend on doing . It was scheduled just before my shoulder symptoms began in February, 2022. Symptoms are still limited to that limb and I can still use my right hand and other three limbs. Still walking for 1-2 miles at a stretch. Probably could do more but trying not to overdo anything.
I do see some people can still travel and would be interested to know some of their strategies and the like.
Also, any thoughts on other mobility issues such as wheelchair accessibility vehicles- covert vs buy vs lease vs daily rental.
FYI, I am enrolled in a Medicare HMO so will have to contact them to learn all the intricacies of dealing with DME and copayment that can go on forever and you may never own the equipment.
Sorry, venting I guess. After my last post, I only have to wait 2 hours before I was allowed to post again, maybe soon I will be allowed to like others posts.