[RobertS]

Still working full time and trying to keep up at the homestead so no SS, but I did PT for about 3 months, got lots of knowledge on what exercises I can do and ones I should not. It has helped, but I still have to pace myself no matter how much work needs done, if I over do it, I am usually done in for the day.

[RobertS]

Thanks for the info

[RobertS]

going to start with a probiotic, as far as fermented foods, I do ferment my own sauerkraut and pepper hot sauces if that counts.

it is getting better for me, I have learned to never take my pills on an empty stomach, that alone has help alot.

Thanks

[RobertS]

Agree, I have learned to eat a bit before the pills, thanks

[RobertS]

I will try adding some probiotics and see if it helps

Thanks

[RobertS]

Agree, always eat a little something

[RobertS]

I have switched my eating routine, now I never take meds on empty stomach and that has helped alot, still not perfect but no panic runs to the toilet anymore.

thanks for the info

[RobertS]

thanks

[RobertS]

I did up my D3 to 5000iu morning and night. I was thinking I would do this for a couple months and then try to cut back on my pyridostigmine, currently at 120mgx3. I spoke to my nero guy, and he said it is not a good enough study and he did not believe it would make a difference. I also spoke to him about huperzine A and he advised against it. Unfortunately he seems to be against most all supplements in general and wants me to stick to prescription based solutions. I am not happy about that, I think I may have to find a new guy. Unfortunately, not many Neo people in rural Iowa to choose from.

I will attach the article I read on Huperzine A as well. It is a lenghty paper, the key parts start at section 5, but the whole thing is interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9608237/#:~:text=In%20a%20study%20with%20128,compared%20to%20prostigmine%20%5B69%5D.

ncbi.nlm.nih.gov

Effects of Natural Products on Neuromuscular Junction

Neuromuscular junction (NMJ) disorders result from damage, malfunction or absence of one or more key proteins involved in neuromuscular transmission, comprising a wide range of disorders. The most common pathology is antibody-mediated or downregulation ...

[RobertS]

I think the script you are looking for is .125 mg of Hyoscyamine Sulfate, that is what someone above said helped him with the diaherra

[RobertS]

Agree, never on an empty stomach for me anymore. I usually skip lunch as I am trying to lose some more weight, but now I have to eat something with these pills every time.

thanks for the info

[RobertS]

Thanks for that additional drug tip, If I dont get this under control soon I will see if my nero guy will give me a script for that

Thanks again.

[RobertS]

all good data, thanks, .125 mg of Hyoscyamine Sulfate, I have not heard of that but I will do some digging in.

[RobertS]

4 month, thanks for the target, I am going to keep pushing through. the Drug does a very good job at keeping the whole weakness thing at bay, but the poops are just too much. I will hang in there for a few more months.

Thanks

[RobertS]

I will get me some, at least on stand by, and maybe a spare for the work desk. 8 hour work day is a long long day if you are clenching for the whole thing.

[RobertS]

Thanks for all the data, I do eat pretty healthy, we seldom eat out, I have a very large garden that we can most of our daily veggies, 3 dozen hens for eggs, and during the summer months we have plenty of our own fruit. We keep 15 to 25 colonies of bees so I do not spray any chemicals which makes gardening a challenge but we still get more than enough good food for us. Neither my wife or I can tolerate most town food, it is just too processed with too much chemicals for us.

I probably need to find me a good MG doc, I live in a very rural area and there is not much for choices around here. Thinking about going to Kansas City and seakign out a specialist, they are about 5 or 6 hours south.

I have my next doc app this coming Friday, I will talk to him about moving my pills around a bit. I always thought that if I take at noon and petter out at 4, and cannot take the last dose for the day until 6p, how bad would it be if I took one at 4 and one at 6, that would help me get past that 4 to 6pm window of drag as well at the 10 to 12 window.

Thanks fo the tips That is why I am here, I am sure someone else has fought the same battles I am facing now, why not educate myself instead of just fighting it the whole way.

Thanks for the feedback

[RobertS]

That makes me feel a lttle bit beter, any thoughts on how long it took to get back to normal for you?

I am likely in week 6 by now. I can honestly say, I may bee seeing a little improvement.

Thanks for the data,

[RobertS]

Thanks for the info, we are still playing with the meds, we dialed the drug back form 120mg to 90mg x3 but that is not fixing the poo problem but I can feel the weakness creeping back fast. Got to get back to the 120mg dose soon.

[RobertS]

Good luck to you, this thing scares me more than I care to admit, I am 58 and I cannot go from my truck to the milk isle and back at a walmart without using a cart, I wont make it without something to lean on and help with balance.

Hang in there, I am focusing on fighting my autoimmune disease as opposed to fighting MG, I think there is more data on ways to push an autoimmune disease into remission than fixing MG.

[RobertS]

you may benefit from some core strengthening exercises. Before I was MG+ Mayo wanted to fuse my back, but they needed me to do some PT and loose some weight. Lost 60lbs and did some PT and got some significant back pain relief. I crushed L1 and T12, it is a mess up there so exercising my back was difficult but we found a trick. We found a way to strengthen my back without moving my back but still activating my muscles. I would stand in a doorway facing the latch hole, reach out with each arm one at a time and push against the wall but not moving my back. My back would hold against the rotational force from my hand pushing on the wall. Alternate side to side, turn around and lift up on the doorknob or push down, again activating muscles without motion. It really help me get back moving again. Now, I am no superman after that, but I am better than I was. That said, I believe the MG caused alot of my back weakness that drove me to not using it enough and letting it get so far out of shape.

[RobertS]

When ever we go shopping, I push the cart, it is my walker on those long distance trips through the store. Recently I find myself benefiting from alternating between ibuprofen and tylenol, in the past I was strictly a ibuprofen guy, but alternating I believe help both be more effective in muscle and body aches Thanks for the info

[RobertS]

Agree, I see him this coming Friday. Thanks

[RobertS]

Thanks for the info, there is just so much to learn. I live in a very rural area and I know of one doc in our area, seriously considering trying to connect with specialist in Kansas City if I can not get this under better control.

[RobertS]

yes, a wet noodle, it really takes effort to stand up straight and I find myself leaning on an elbow way too much. I think this elbow leaning is mostly to blame for my new relentless neck pain. I am 57 and I have never had such neck pain as I have had in the last 6 months.