twitching all over, weak, ALS

Posted by modified82 @modified82, Jan 27 9:52pm

diagnosed with ALS last March. twitching started in lower legs in 2009, now has spread all over. Had spine surgery around 2011 and a spinal chord surgery in 2020. Than 4 Rituxan infusions in 2022. all procedures were due to me complaining of tripping and legs tingeling and thighs very sore. Now symtoms are a lot worse. Dr isnt sure now if it is ALS. I really feel like I am getting the run around in the health care system. Currently on Riluzole, Relyvrio and Radicava. One of them are tearing up my gut. Any advice?

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Lori, Volunteer Mentor | @loribmt | Feb 1 10:06am

Hello @modified82 Your symptoms sound like they’re progressing and this has to be very frightening for you. Your doctor had initially diagnosed you with ALS but now they’re not sure?
Have you considered a second opinion, maybe from a large teaching hosptial such as a university, or the Mayo Clinic? This may be a good time to have another set of eyes take a look and evaluate your situation. At least you would’t be feeling so helpless and frustrated about your care level.

This is a link to Mayo Clinic to request an appointment. http://mayocl.in/1mtmR63 It will take you to their main site where you follow the prompts as a new patient. There are 3 campuses in the US…Rochester, MN Phoenix, AZ And Jacksonville, FL.

Do you think this might be an option for you?

modified82 | @modified82 | Feb 4 5:35pm

In reply to @loribmt "Hello @modified82 Your symptoms sound like they’re progressing and this has to be very frightening for..." + (show)

Thank you for the response and info. Yes I did that 2 weeks ago and got a response saying I am not elegible. Should I try again? Im pretty sure I did the same thing you said to do.

Lori, Volunteer Mentor | @loribmt | Feb 4 7:13pm

In reply to @modified82 "Thank you for the response and info. Yes I did that 2 weeks ago and got..." + (show)

Hi @modified82 It’s disappointing to hear you weren’t eligible for an appointment. The criteria for appointments at Mayo Clinic are complex and include many variables. The clinic has more requests for appointments than available openings. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors.

But you can certainly try again. I know a number of patients who have had success by repeating the request. A physician referral to Mayo isn’t necessary but sometimes it can also help to secure an appointment. I hope you try again and have success this time.

I also found a discussion in the forum with a member who has symptoms similar to yours. Maybe you’ll find some helpful suggestions.

BFS or ALS?
https://connect.mayoclinic.org/discussion/bfs-or-als/

One more link for you. This is from another post where a member requested ALS clinics. This might be another resource for you.
https://connect.mayoclinic.org/comment/785021/

When your current doctor said they’re not sure now if it is ALS, did they have a differential diagnosis? Are there any more tests scheduled for you?

modified82 | @modified82 | Feb 5 7:06pm

Hi Lori, thank you for the quick response. I totally messed up and saw that it was another hospital that denied me for 2nd opinion, not the Mayo Clinic. The link you gave me said it will be up to 3 buisiness days to hear from them. To answer your other questions, no, no other diagnosis. the other upcomming tests are another genetic test and more blood work. Iv'e had neurologicle issues for years and lived with it. I have built houses, surfed and raced cars my whole life which take streangth. Within 2-3 years I have lost all streangth to do any of that. I cant even do 1 push up. Something for sure is going on. I just want to get to the bottom of this and at least get the correct treatmant. Thanks again for your time.

Lori, Volunteer Mentor | @loribmt | Feb 5 7:21pm

In reply to @modified82 "Hi Lori, thank you for the quick response. I totally messed up and saw that it..." + (show)

How frighting to be losing so much strength. I’m sure pulling for you and hope you get a appointment at Mayo. This is obviously impacting every facet of your life and finding an answer is the mission right now. I was so impressed with Mayo when I developed inflammation on my spinal cord a few years ago. So we’ll be optimistic that you get a consult. If not, keep trying. Please keep me in the loop, I’ll like to follow your story.
To make sure I get a notification when you write, if you could make sure my @loribmt shows in the comment that would be helpful.
Wishing you all the best, Lori.

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