Log 1: Year in

[u/Notmeleg]

I’ll start this by saying I am about a year into symptoms. My main symptom was extreme leg tightness on the right side that lasted about 8 months until I started my experimentation. Within that time I also experienced pains throughout the body, burning sensations in my hands and feet, cold sensations as well, water feeling on limbs where there was no water, muscle fatigue in various locations, neck heaviness/weakness, hand dexterity issues and stiffness, swallowing issues, sleep disturbances, every type of twitching and more.

I’ve been heavily experimenting with supplementation for 4 to 5 months. Somethings felt like they were helping and others felt as if they made no difference.

Today about a week into trying a new regiment that another user was kind enough to provide to me, I am so far experiencing a stark contrast to my usual symptoms. An overall easing. It is hard to say if this will be long lasting or short lived but today I am feeling better than I have in a years time and it gives me some hope.

Leg is way less tight, both legs feel more stable, walking gait feels more natural, going down stairs faster at a speed more appropriate for my age (29). Swallowing feels improved and getting the choking less, speech feels more clear. Hand stiffness and dexterity issues are gone for now.

I’ll keep you all updated. Hoping to continue to see improvements but it may take some time. My body has been through so much but one of the reasons I am optimistic is because these symptoms are all encompassing. It consumes your every waking thought. And today is the first day in a years time that I can find my mind wandering, like it used to, thinking about things other than my symptoms, walking down a hallway without thinking about how stiff, tight and off my leg is, and instead about my life and day in general.

[u/heresiarchx]

Can you please share the supplement protocol you are using now ? is it also helping with the fasciculations?

[u/Notmeleg → u/heresiarchx]

I’m hesitant to share because I don’t want people wasting their time and money or risk adverse effects. It’s early days in regard to me taking these supplements. The improvements can be short lived or cause some unexpected problems. Ill be sure to update this sub with any changes or sustained improvements

[u/Outrageous-Roof-3095 → u/Notmeleg]

I am very very happy for you! Can you please share at least one it two supplements that you think has helped you most. And don't you worry eg myself I have spent a lot of money on various supplements and have not found anth that would really help sadly. And even if the supplements are helping you or will help you longterm it does not mean they will help others, but it would be great to hear what supplements you believe helped you most. Thank you and wishing you further improvement that we all stuck in a limbo are waiting for xx

[u/Inner-Chicken0731 → u/Notmeleg]

I could have written your post. I have every symptom you do. Just wondering how you're doing now and what has helped you most if you're seeing improvement?

[u/Notmeleg → u/Inner-Chicken0731]

I continuously trial and error things. Refusing to get complacent has if someone could swap into my body/mind that would likely feel instant terror. I’m battling some beast. Currently using astaxanthin, taurine, baicalin (previously Beberine), spermidine, and occasionally a glutamate scavenger.

[u/Notmeleg → u/Notmeleg]

I have sustained improvement in most areas, no longer feeling off balance, motor skills feel speedy again. Occasionally I still get tight sensations here and there. Now mostly in hands but way less severe, and leg feels normal.

Edit: also “weak feeling legs” occasionally when standing still for awhile. But overall life has been a lot more liveable recently.

[u/Inner-Chicken0731 → u/Notmeleg]

Thank you for sharing and im sorry youre on this journey too. Have your doctors hinted at anything? I have 2 of every "ologist" at this point and they are all stumped. Mine started with headaches in Jan and has migrated into speech issues, all over muscle fatigue whenever one is barely used, leg weakness, body wide twitching, throat tightness/ pressure with globus.

[u/Notmeleg → u/Inner-Chicken0731]

Only nerve hyperexcitability syndrome has been suggested at this point in time. Emg does not come close to ALS in terms of diagnostic criteria according to my ALS clinic neuromuscular specialist. How about you?

[u/Inner-Chicken0731 → u/Notmeleg]

Pseuotumor cerebri in Jan. Thoracic Outlet Syndrome and TMJ in April, esophageal dymotility in June. No explanation for nonclinical leg muscle weakness, perceived speech issues, or guesses as to why all of this came on suddenly and is morphing. I no longer have the pseudotumor symptoms. But all this throat tightness and mouth fatigue and digestive motility has remained since April. Manometry test today showed lower esophagus is not activating during swallowing. But no clue why.

[u/Notmeleg → u/Inner-Chicken0731]

Any insight from emg ? Was it clean?

[u/Inner-Chicken0731 → u/Notmeleg]

Yes emg in May of my left side was clean.

[u/MeanAsk8995]

That is amazing. Any improvement with stuff like this is a huge win, cause so many things have been tried unsuccessfully. And it's a big mystery. Keep us updated.

[u/whanaungatanga]

Hey there

Have you had good labs drawn and tested for Lyme and co-infections?

[u/Notmeleg → u/whanaungatanga]

Standard Lyme test I had down. No tests for co-infections.

[u/whanaungatanga → u/Notmeleg]

What lab did you use?

[u/Notmeleg → u/whanaungatanga]

My neuro did the standard Lyme test. I believe quest was used.

[u/whanaungatanga → u/Notmeleg]

As someone had Lyme disease and co-infections, your symptoms are very familiar. Lyme tests are notoriously bad. I had approx 15 Lyme tests that were negative before sending my labs to a specialty lab. IgeneX or Stonybrook. Highly recommend you test there. I had a positive from both. It can be expensive but it is worth it to at least rule it out.

If you have any questions feel free to reach out. Wishing you everything.

[u/[deleted]]

I'm glad to hear, you are finally getting better. No test eases the mind like a relief from symptoms.

[u/Candid_Tree3889]

How is it going now regarding the supplements? Do you still feel better?

[u/Notmeleg → u/Candid_Tree3889]

Yes. Mostly concerned about muscle loss and occasional uncomfortable leg feelings while standing still. Walking feels worlds better, stairs too. Feel like I’m experiencing way less rigidity and stiffness. General fatigue is reduced as well. Did not do this with only the listed supplements in the OG post. Have continued experimenting and adding and getting rid of things that feel like they do nothing

[u/Candid_Tree3889 → u/Notmeleg]

Interesting, no issues on the upper part? Throat or swallowing?

[u/Notmeleg → u/Candid_Tree3889]

Sometimes I felt like my swallowing was worse yes. Been less of an issue or less noticeable now though

[u/yamsnz]

Which supplement have you found to make the most difference so far? I know it’s hard to tell with placebo effect and everything but I have found some things (like magnesium or vitamin d) make the twitching a lot worse.