I saw my first neuro after over five years - Cure Parkinson's

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I saw my first neuro after over five years

ion_ion profile image
26 Replies

Today I saw the MDD who diagnosed me in august 2017. Before him I saw other doctors who could not figure what I had. So after over five years I saw him again. That time my score was 17 and today 23. He was surprised to find out my progression was very small. I told him I think the Thiamine helped me but he did not buy it. I told him I feel much better than five years ago except the tremor which is a little more intense and for which the C/L does almost nothing. He recommended to take 2x100/25 C/L pills three times a day instead 1x100/25 for five or six times a day. I taught by taking smaller quantity of medication spread on smaller intervals of time assure a constant level of medication in the blood and prevents dyskinesia without affecting the results.

Is anyone taking more pills at once at bigger intervals of time? Is that helping with the results?

I asked him about FUS and he presented a very negative opinion based on some data he had. He said the results are mediocre and that’s why FDA did not approved it, which actually is false. I tried to explain him Sonimodul and USA FDA approved procedure are using different targets but the guy just did not listen. The data he had was from FUS in USA and he was not impressed by what I said about Sonimodul. I asked him to look on their website after he was telling me the procedure is for ET and not PD. So I gave up after I noticed the minimum lack of interest to spend five minutes reading about Sonimodul.

But he insisted on DBS which gives 99% positive results without side effects.

26 Replies
jimcaster profile image
jimcaster

If he actually said these things, I would not have any faith in him:

1. The FDA rejected PTT

2. Sonimodul treats ET, not PTT.

3. DBS is 99% effective.

4. DBS never has side effects.

I am reminded yet again that we have even greater incentive than most doctors to keep informed about the most recent treatments and innovations.

ion_ion profile image
ion_ion in reply to jimcaster

I think many people here are better doctors than this guy. 😀

Smittybear7 profile image
Smittybear7

I am taking 1 c/l (25-100) every 8 hours.Isthat the same as what you were talking? Or were you taking c/l 100-25? After about 21/2 hours after taking the pill,mytremorsI increasein intensity and invol sometimes the whole right side. My big toe cramps up and sometimes my quadriceps cramp.i also get a aching on my right side.I have a problem with constipation and sometimes pressing between my belly button and hip relives it I try to adjust the timing of the medication to 7hrs for 2 doses then longer b4 bed. I don't know what needs adjusted. Let me know if increasing of those has helped at all with your tremors. Good luck I am struggling too and I'm not getting much help from the drs They can't tell me if it is too much or too little.I.I am nervous about making things worse by increasing doses.I was diagnosed with parkinsonism in 2017.I have been on medication for about 1 year.

ion_ion profile image
ion_ion in reply to Smittybear7

Actually 100/25 or 25/100 is the same thing (100 L and 25 C). I take one pill every 4 hours for the tremors. He told me to take 2 pills every 8 hours and that may help better. I'll try but I taught one per four hours assure a steady amount of medication in the blood stream and avoids dyskinesia. I was diagnosed in 2017 like you and I have only mild tremor in my RH which C/L helps just a little. All the other issues were resolved by the Thiamine. I hope FUS in Switzerland will remove the tremor and be symptoms free.

puretone profile image
puretone in reply to Smittybear7

Dr. Eric Ahlskog's book 'The New Parkinson's Treatment Book' is really comprehensive on levodopa therapy. He recommends starting on three IR 1-tablet doses a day and raising that half a tab each dose after a week, repeating that increase each week until you get to 2 1/2 tabs per dose (nausea permitting!). You can then gradually back off from 2 1/2 to find what works best. There is a lot of great info on most things Parkinson-related in that book! Regarding constipation my partner has found good old-fashioned prunes, 2 or 3 at lunchtime as well as 1 or 2 magnesium glycinate capsules in the early evening seem to do the trick (for her at least).

Smittybear7 profile image
Smittybear7 in reply to puretone

Thank you! I have been on 1. c/l 25/100 for 1 year.. It seems to me that when I added 1/2 pill in the am the tremors increasd and I got some shoulder shuts, lip quivering,.So I cut back a half a pill. I'm still having those issues but I'm afraid if I increasd the dosage I will have dyskinesia. I am going to try b1 again but am frustrated about what dose to take.I had started at 500mg twice a day at the same time as I started the c/l. I quit taking it because I didn't know what was causing the side effects. I am really frustrated and worried about side effects of increasing anything. Did you experience any other that.i appreciate your advice. Thanks ! I appreciate any suggestions

Smittybear7 profile image
Smittybear7

 how much B1 do you take and how often do you take it? Thanks for your help

Smittybear7 profile image
Smittybear7 in reply to Smittybear7

 is your c/l immediate release?

ion_ion profile image
ion_ion in reply to Smittybear7

Yes, it is IR and I take 1g of B1 per day at once after lunch.

LAJ12345 profile image
LAJ12345

if you are feeling pretty good I would just carry on with what you are doing unless you aren’t feeling very good any more.

Smittybear7 profile image
Smittybear7 in reply to LAJ12345

 who are you responding to?

LAJ12345 profile image
LAJ12345 in reply to Smittybear7

ion-ion

Smittybear7 profile image
Smittybear7 in reply to LAJ12345

Tthank you

ion_ion profile image
ion_ion in reply to LAJ12345

The reason I want FUS is that I feel confident I'll be PD free after the tremor is resolved. Doctor Jeanmonod confirmed that after he saw me in June.

LAJ12345 profile image
LAJ12345 in reply to ion_ion

I see. Sorry we haven’t had any experience with fus.

Farooqji profile image
Farooqji

I agree with LAJ12345. The condition which you are telling does not qualify you for the risky intervention at this stage. You can try other medications for calming down the tremors if sinemet do not work for you

ion_ion profile image
ion_ion in reply to Farooqji

What you say makes sense but I still work and interact with people and I want to get rid of the single symptom I have now. Usually the medications are coming with side effects but I'll try his recommendation which I doubt it will help.

Farooqji profile image
Farooqji in reply to ion_ion

have you tried CUE1 ? I have heard that it calms down the Tremors as well as other PD symptoms . The sell it to the US and UK citizens only. It's just 300 Euro

ion_ion profile image
ion_ion in reply to Farooqji

No. I knew the vibrations help against the tremor (I did myself some experimentation). But is not clear where I can buy this CUE1 from in USA or Canada.

KERRINGTON profile image
KERRINGTON in reply to ion_ion

About 3 weeks ago I got a vibration ball from Amazon called Viraball .which is about $ 100. I can't believe how much it has calmed my tremor which was very exhausting.

ion_ion profile image
ion_ion in reply to KERRINGTON

So how do you use it?

KERRINGTON profile image
KERRINGTON in reply to ion_ion

It is the size of a soft ball, and fits in the palm of your hand. Place it hard side down in palm, press soft spot on top to turn on. It has 3 settings which are not well explained. I use the 1st setting. It automatically stops after 10 min. It is recommended to use 3x a day.

SBLF profile image
SBLF

they all brush off the high dose thiamine. it is helping me and thousands of us. but they won't even consider it. it's a vitamin. try it with a few of your patients and see what happens. but no. good for you for staying the course. love to hear about how little progression you have had. I am hoping for the same

Steve

ion_ion profile image
ion_ion in reply to SBLF

I spoke with three neuros about B1 and they just said it was placebo. One of them confirmed that other patients told him about good results with B1 but that it was irrelevant.

SBLF profile image
SBLF in reply to ion_ion

I just don't understand these docs, they are so important to us, but they seem to believe they know everything there is to be known. with so many of us having positive results from high dose thiamine I would have thought someone would want to try it out or really get involved to see why. but no, to them it is irrelevant. sad for all of us and for the docs too.

LAJ12345 profile image
LAJ12345 in reply to SBLF

I think they know if people could just feel much better taking vitamins they can order themselves there would be less need for them to see them to prescribe their drugs.

My husband swears by Hardys daily essential nutrients with added vitamers. He reduced the number he was taking a day from 12 to 9, that was when he went backwards, got put on higher dose of long life madopar and I thought he would die. They completely disabled him. He couldn’t even get into the bed or go to the toilet by himself with out me having to hold it for him!

More meds, more side effects. It was only when I reversed him out of all the changes they made to him and made him increase the Hardys to 12 again that he has come back to feeling much better. Not cured but feeling much better, happy, calm. That was no placebo effect.

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