Als diagnosis confirmed Mayo clinic Rochester Minn May 2

[steve913]

i started with left foot drop started 5 months ago early november 2024. Unable to walk without walker left ankle also frozen with the footdrop by february Two weeks in hospital feb10th to 24th and under went Plex treatments Pletherisus plasma anti body exchange no improvement after 4 months clonus both feet and vasiculations (twitching) in both legs and arm stiffness in lower back and after 4 months in spasms started in both legs radiating upward from feet to lower back eyes good, swallowing and breathing unaffected muscle weakness in legs ,loss of balance, urgency to pee but limited amounts .. tested negative for GM1 antibody

Six weeks of physical therapy early march to late april shows not getting worse seems to be a plateau for leg strength and right leg still fully functional full set of mri s w contrast done in hospital in mid february brain,cervical.thorassic,lumbar and sacrum Slight bulging disc at L5 and pre arthriis, no lesions otherwise unremarkable while in hospital in mid february cat scan of abdomen and chest showed no malignencies but did show a pulmonary embolism in right lung and subsequent scan showed small blood clot in lower left leg i have no prior history of blod clots.

spinal tap showed fluid unremarkable ,blood testing ruled out heavy metals exposure I did have moderna vaccine in mid 2019 and the booster 8 months later. I submitted the above to chatgpt and got a lot of info and questions to ask neuromuscular neurologist at Mayo clinic. I spent four days at Mayo extensive testing for confirmation of ALS diagnosis. Will see UT san Antonio Carlayne Jackson MD for continuing Als followup Im waiting for genetic test on june 16 to see if i have the sod1 gene I have the medicine that extends life 4 mos or more Rilusole but havent started wanted to know about side effects also my pulmonary is at 80% so i may qualify for another expensive med Radicava?that extends timeline by 33% average

If you have sod1 gene i get the toferson med for free and it extends timeline as much as 70% ? Has moderater had experience with these ALS drugs? Sorry for lengthy post

 

[Nikki J]

Hi
Sorry for your diagnosis.
Re meds I take riluzole - have taken for 11 years. No significant side effects. It works better started early and I doubt I would be here without it. I do not take radicava. It seems to help some people. I hope you are one.

Tofersen/ qalsody is not a cure but it is definitely the best thing available for the small subset of pals who are sod1. I know people who have been stable on it for years when their family has generations dying quickly after onset. Not everyone stabilizes or improves but if given early enough it seems virtually everyone at least slows.

 

[steve913]

Thank you I think im early stage here since left foot drop started in nov 2024 foot drop and has not progressed past left ankle . I do have vasicullations on both arms and legs but cant feel anything. I guess i should be thankful its not bulbar one. I will be doing the 48 pt test on the June 16th visit. I understand you can lose up to1 point per month. Im hoping the progression is slow. Any other tips on management? Im on 2mg as needed of tizanidine for spasisity in my legs. it helps

 

[SMMNY]

I'm sorry to hear of your diagnosis. I was diagnosed a year ago with first symptoms in February 2024. I do carry the SOD1 gene and have been receiving Tofersen since June 2024. I hope that you test positive for this gene. Tofersen has significantly slowed, but not stopped, the progression of the disease. I also started taking Riluzole in May 2024 and have no discernable side effects.

If you have the SOD1 gene, you are eligible to receive tofersen. I don't know about free. It depends on your insurance coverage and Biogen offers payment assistance, but I don't know those details. Do you have a history of ALS in your family? We had always been told my mom's ALS was sporadic as there was no known family history until I became symptomatic.

My neurologist recommended high dose injections of B12 (methylcobalamin 25mg/ml) administered twice a week. There have been studies done in Japan that show disease progression slowing. Again, early treatment is most effective. It is an off-label use here in the United States, so not covered by insurance. I would encourage you to ask your neurologist about it.

The ALS-FRS (48 pts) is available online and is quite subjective in my opinion but one of the ways disease progression is measured. I finally found something online that said 1 pt per month loss is average. Though you will be looking for a prognosis and progression rate, be patient. It took quite some time for my neurologist to know me well enough to comment on this no matter how many times i asked or different variations of wording the same question.

I'm new to the forum but happy to answer questions if you have them.

 

[steve913]

Thank you. No family history of ALS, My mother was diagnosed with Parkinsons at age 68 and passed age 77

 

[rhm1119]

Steve, thank you for your comprehensive notes. I find this kind of report from pALS in early stages helpful as there are so many questions and decisions to make! I'm also a newbie to ALS. I had a long prodrome with onset of left hand weakness in 2022. Because of the timing, I, too, thought it might be related to Covid illness or immunizations. Is there any data on that?

EMGs at the onset of weakness showed only carpal tunnel, so I had surgeries of carpal and cubital tunnels with no relief of weakness. The weakness, and eventually muscle atrophy, stayed in my hand, and due to cervical spine pathology, I had C7-T1 surgery a year ago, again with no change. Finally EMG changes appeared, enough for a local neurologist to make a possible diagnosis in the fall of 2024, confirmed by an ALS clinic in March 2025. I am told this is an atypically slow onset suggesting possibly a slow course. Any comment from moderators on that?

Approaching my three month clinic return, I have noticed consideable weakness in my left upper arm, and milder weakness in my left leg, so I wonder about slow progress. I can walk and drive but use a walker when I go longer distances to protect from falls. I purchased a carbon fiber one when I developed trouble lifting the regular one into my truck. I started riluzole in March and Nuedexta in May. I have no side effects from either. I noticed a considerable improvement in motivation, energy and activity with Nuedexta, and no further crying spells (which allowed insurance coverage). I wonder if others have tried Nuedexta and what their experience has been?

I am interested in adding Radicava and trying B12 injections if my neurologist goes along with it. I would love to join a clinical trial but the neurologist says my onset was too slow to qualify. i can't figure out how to get access to EAPs.

I would love to hear any comments from others recently diagnosed and from the wise moderators. (I have been following this forum for awhile and always appreciate their comments).

 

[lgelb]

You can search for clinical trials directly on clinicaltrials.gov. Your neurologist is not necessarily keeping up with all the criteria of every trial. You can also contribute to future treatments in other kinds of studies that are listed there.

There is no evidence of any vaccines triggering ALS. But we do know that Covid may precipitate ALS and that ALS can get suddenly much worse, and that those with pre-existing medical conditions that could make Covid riskier (74% of US adults at last count) are more likely to age faster post-Covid, with early-for-age damage to blood vessels, heart, lungs, kidneys, brain, among others.

We now know that way past a complicated cold or other respiratory illness, Covid directly infects the blood vessels, allowing virus particles to go to and damage virtually anywhere in the body. So that is why even young, healthy people can get long Covid and/or early heart attacks, strokes, diabetes, etc. as we are seeing.

It would be unusual for Covid complications to manifest as unilateral hand weakness, but as noted above, it can spark ALS, we believe. Your course does sound like slow-to-average progression so far.