Probably time to chop off my right arm, hopefully getting rid of my PD symptom

[Grumpy77]

My Right hand tremor seem to making an aggressive comeback at an exponential rate and defying any improvements from medications or supplements. Its as useless as not being there anyway, why the added embarrassment and inconvenience

I think with my right arm chopped off, PD problems will be over for me... Ok, I've got these other symptoms-- this constipation thing and some massive stiffness on my back-neck and my right leg dragging and my movements being slow and my communication getting incoherent... but the thing is I can live these other issues, but aggressive tremor,-- no way, no no no no no no WAY, I CAN'T LIVE WITH THAT

I just need to convince myself up to 100% (right now its about 70%), then convince my family also (right now thats zero%)

[johntPM]

Grumpy,

I'm sorry to hear that the tremor is causing you a problem. My experience, 14 years after diagnosis, is that when I'm properly medicated the tremor gets significantly less.

To get relief from tremor often requires a higher dose of levodopa than that which is required to get relief from other PD symptoms.

You mention constipation. This can decrease the amount of levodopa that gets absorbed by the body. Taking macrogel (Movicol), along with a lot of water, goes some way to relieve this for me. And has the added advantage of making the levodopa that I take more effective.

I'd advise that you discuss these and other options with your doctor.

John

[Grumpy77 in reply to johntPM]

Thanks for your advice and encouragement John, I'm encouraged that 14 years after diagnosis you're coping much better. I'm just a few years in and I'm completely messed up mentally... I think it has to do with acceptance, i haven't fully accepted PD yet and this is resulting in depression which is causing my body to cope much much LESS

[Hidden in reply to Grumpy77]

I have never accepted the diagnosis but I am still taking my Rytary and doing well.

Keep your mind steady and get better.

[chartist]

Grumpy,

I can't remember if you are taking B-1, but I thought you were. If that is the case, other members who have been on B-1 for months to two years are starting to report a worsening of symptoms and so far, this worsening of symptoms, appears to be related to "a new decreased need for B-1". So far, this seems to be one solution to the problem. Dr. C said it could take a slight dose reduction to correct the problem after stopping B-1 for a week or so.

Art

[Fed1000 in reply to chartist]

Hi Arte, I'm a fan of vit. B1 that I've been using for a few months. But I am worried that after some years of use, some symptons have returned to some members. You think that this probably comes from an overdose because B1 has repaired part of the damaged cells, in simple words. This is the reason why some members are better off having reduced the dose of B1. So in my opinion it would be very useful to know the present and future state of health of those who recognized themselves in this post.

[chartist in reply to Fed1000]

Yes, according to what Dr. Costantini has said, it could happen after enough time of months of using B-1. I had forgotten that one way he mentioned to deal with it, was to take a mini vacation of a week or so off from B-1 or reduce the dose slightly. I think that forum member Kia 17 took off about a week from using B-1 and then started B-1 again at the same dose he had been taking, but this time he skipped B-1 for one day each week and this resolved the problem of increased symptoms.

Art

[Grumpy77 in reply to chartist]

Thanks for the advice on B1 Art. I was even thinking the worsening of my symptoms is due depression and not accepting pd. Reducing/experimenting on b1 dose is an option i should seriously consider before thinking of chopping off my arm. THANK YOU

[chartist in reply to Grumpy77]

Grumpy,

It seems that more and more members on B-1 are reporting similar after being on B-1 for about 6 months to 18 months, so apparently Dr. C was correct in recommending mini vacations from B-1 every three months or so. Either that or take about a week off and resume at the same dose, but leave out one day or two days per week as he recommended to Kia17 (only one day off per week) to good effect.

Art

[Dap1948 in reply to chartist]

Yes, overdosing on B1 increases my tremor. I am in the process of reducing again.

[parkie13 in reply to Dap1948]

Hi, what dosage are you on right now? I am using the sublingual B1. And I do it haphazardly once in awhile. And yes, it does increase my Tremor when I take too much.

[Dap1948 in reply to parkie13]

I’m currently on 1x100mg every other day. I’ve just come down from 4x100mg over 7 days. I may need to go back to that or perhaps 5x100mg over 9 days. They’re subtle differences!

[parkie13 in reply to Dap1948]

thank you

[lenamm]

You might want to look into some of the FUS ( focused ultrasound) surgeries. My left sided tremor was so severe (esp my dyskinesia tremor) that I was completely non functional. It looks like I was having convulsions on my left side esp my arm. Post FUS surgery in Switzerland I am about 95% tremor free on the left now and my left hand is usable again. It was truly a miracle.

[Grumpy77 in reply to lenamm]

Do you still have to take PD meds after the FUS surgery?

Are you still required to take your PD meds?

AND how much did it cost you?

Thanks

[lenamm in reply to Grumpy77]

I take 100mg Er twice a day now, $36,000 CH

[Grumpy77 in reply to lenamm]

What's CH?

[Hidden in reply to lenamm]

Hi Grumpy77. I am guessing that it is CHF which is Swiss Franc currency.

[lenamm in reply to Hidden]

Yep - was $36000 at the time I went

[andrehypnotic in reply to lenamm]

Why so expensive?

[lenamm in reply to andrehypnotic]

Pretty cheap for brain surgery IMO. DBS in the US usually bills at about $150,000

[maryalice]

2Do you know if it is available in the USA. We're there any side effects?

[lenamm in reply to maryalice]

The surgery I had is only available in Switzerland. The US is trialing two other surgeries but the pallidothalamic tractotomy is better and can be done on both sides. Search FUS and you will find some posts on the surgeries. I had no side effects.

[maryalice in reply to lenamm]

Thank-you..