Feeling a lot worse

[cshamb]

I have got alot worse it seems suddenly I have done great up to now but things have changed. My left leg feels weafk and my meds don't work as well. I am very worried but maybe this is what to expect. I had started B1 and will continue. Any ideas or thoughts would help. Also I seem much more off balance .Thank you.

[park_bear]

It takes 3 to 4 months to manifest the full benefit of high-dose thiamine. Hang in there. Also, my symptoms fluctuate a good bit back and forth for no apparent reason.

[Hidden]

My B 1 dose is 6g daily

[cshamb in reply to Hidden]

Do u think starting with the injections would work faster?

[Hidden in reply to cshamb]

Yes

[Jennyjenny2 in reply to cshamb]

Agree with park_bear.

Depending on how long you’ve been taking the B1, maybe the worsening of symptoms can be attributed to too much? Just a thought. We’ve been trying to get the ‘correct’ dose for my husband for approx 2 years now. In the beginning, he started taking 1000mg, then after approx 7 months, he had worsening of symptoms (vivid dreams, restless legs, weak voice). When symptoms get worse, he stops for several days and then starts at a lower dose. At present he is taking 500mg daily.

And please, DONT WORRY! I know this is easier said than done, but worry will make things worse.

When my husband was first diagnosed, his depression was so bad that it exacerbated his Parkinson’s symptoms. At one stage he couldn’t get out of bed, he was freezing, choking on food, no energy, couldn’t even shower himself! The list goes on. At times his balance is worse too, so we go for beach walks...this seems to clear his head (he says) and he feels better. Thanks to madopar, the antidepressant and B1, he now does Pd Warrior 2 x weekly, Pd Boxing 3 x weekly, plays tennis 2 x weekly and walks and swims in the warmer months.

Hope this helps a little, and please stop worrying 😊

[cshamb in reply to cshamb]

Where did u find a doctorto give the b1 interveneous shots

[Gioc in reply to cshamb]

I.M. = Intra muscolar

[ABDESSLAM1 in reply to Hidden]

Dr C never mention 6g

[aspergerian]

Has your gastric emptying changed? Or your gastrointestinal motility?

[smv123]

Try Rock Steady Boxing or other exercise. Look it up and see how it helps.

[cshamb in reply to smv123]

I started RSB about 4 yrs ago and until last week was still going. Still trying to exercise.

[smv123 in reply to cshamb]

I'm so sorry your are struggling. I will pray for you. Hoping you can find some answers and some relief.

[cshamb in reply to smv123]

Thank you for the Prayers they would mean so much

[smv123 in reply to cshamb]

Just prayed for you this morning. My husbands Dad had PK. And I've seen a few things in my husband that I think he may be developing it. There are some Stem Cell cures that I think will be available in the next 5 years or so and a few others that look promising. So hoping he can hold out that long before it progresses much. I'm really sorry you aren't feeling well. I hope you are going to a good PK Dr. Not just a neurologist. They seem to have physical therapist, speech therapist, and many others that can help. Sending you a HUG for today!

[laglag in reply to cshamb]

Go back to RSB. Tell them you are struggling. Here's a link to classes on YouTube. There are 72 videos from headquarters that were added during Covid-19. Some using chairs, some not. These help but you probably know it's more fun with other PwP's. Hope you start feeling better. I believe there are some for balance. If I find any I'll send them to you.

youtu.be/qbMjKaBA0K4(Not working as expected?)

[Kia17]

Is the weather in where you live hot these days? If yes then I attribute your difficulties to a hot climate.

parkinsons.org.uk/news/heat...

[cshamb in reply to Kia17]

Yes live in Florida its very hot right now

[Kia17 in reply to cshamb]

I guess that’s the reason.

[1rocketman]

My husband has found significant relief by adding Xadago to his regimen of C/L. It has helped to bridge his off time, he is also taking B1 and mannitol with his daily bulletproof coffee.

[cshamb in reply to 1rocketman]

How much mannitol?

[Joanie2]

I am having the same trouble with my legs at night when I get up from watching TV. They feel like Jell-O and I have recently fallen. I see Dr. Gonzalez today and hopefully he will have some suggestions. I think the fact that I am not exercising as much attributes to the problem.

[Somic67]

May be liver intoxicated struggle to manage meds. Try a wash out (Meds suspension, short fast, liver detox) or integration (glutatione IM, B1 and B12), aerobic exercise To sweat and improve limphatic System cleaning (jumper is great for the detox effect)

My opinion is that adding meds is a short term solution

[Hikoi in reply to Somic67]

Somic,

I notice you give in depth advice on the forum and I would appreciate knowing a bit more about you. How long have you been diagnosed, where you are based etc.

[Somic67 in reply to Hikoi]

happy to know that my advices can be usefull to someone.

I'm 52 and diagnosed since 12 years. I'm based in the north of Italy.

I went trou various therapies initially getting worst and worst until I decided to change approach and return to a more natural one supported by a new neuro.

Now situation is stable since years (up to now). I limit number and quantity of meds as much as possible, and search for the natural way first

I'm relativey ok now.

[chartist]

How long have you been taking B-1 and have you noticed any benefit from using it?

Art

[Hikoi]

cshamb

You have been on c/l and mucuna over the last couple of years. You dont say what you take now but it seems to vary between 4/day (last week) and 5 / day (2 weeks ago) of C/L. I think you need a good assessment and a drug regime you can stick to before adding B1. I think you are weak because you are under medicated now you are 11 years on and unfortunately the disease has progressed.

You tried B1 2 years ago. I wonder why you stopped?

[cshamb in reply to Hikoi]

Yes u r right I talked to my neurologist today at usf because I was feeling so bad, He seemed to think it was how I was taking the pills. I will be taking 5x a day along with Zandopa. I had been on the same dose for years. Had pd for over 10 yrs, I probably should have increased a long time ago. That was at least part of the problem. I am also on B1 everyday now.

[Hikoi in reply to cshamb]

You have done the right thing. Good luck keeping to the regime. I suggest you enlist someone to oversee your pill taking at least for a couple of weeks. I know i am tempted to miss a pill because i feel ok. But it doesnt work, you pay for it one or 2 days later. And thats the difficulty, it isnt necessarily immediate. So people look for answers in the wrong place