Hoping for the best

[Goldencbc]

Since diagnosed in February I have been following this site. I am taking Selegiline and started c/l 25/100 in November but am taking only half pills due to nausea. I have trouble walking distances due to pain. I have sciatica and hip arthritis although it is better with c/l. My walking is slow and halting. I have a right arm tremor. I have emailed Dr Constantini yesterday with the form on this site and hope he will respond and agree to treat me. I learned about B1 on this site and am grateful. I do try to walk daily even if using a cart at a big box store or Sams. I also try to dance to music daily as suggested by Alex Kerten in Israel. Thanks for all the knowledge gained on this site. I mentioned B1 to my neurologist and she dismissed it because there is no double blind study.

[Hidden]

Don't let a "doctor's" blindness discourage your pursuit of wellness.

[Astra7]

Neuros are very good at giving prescriptions but not much more.

Lots of things to try. B1 certainly very interesting. Let us know how you get on.

Good luck!

[Gioc]

Hi Golden

you could treat GERD heavily as I did with the anti-acids (pantoprazole), this has helped me a lot with the tremor, thiamina will help you with everything else like it had done with me for more than three years without side effects (100 mg Thiamine Hcl intramuscular injections with a prescription), but also the pills are good. I suggest if you can do an initial UPDRS test and videos to compare, even for yourself. So you can more easily evaluate the condition with objective data. I also suggest a good diet with fresh vegetables that provide the right balance of minerals and other vitamins to Thiamine. Good luck and happy new year.

Gio

[Goldencbc in reply to Gioc]

Thanks Gio, I have taken omeprazole for 4-5 years. Also took pantoprazole at some time. The GERD was causing chronic coughing. I just quit them 6 months ago because have read so many bad things about them long term. I watch my intake of tomatoes, coffee etc and it is better. My doc says to try Zantac. I don’t find it very helpful. Dr. C told me to do those videos to send to him. I just have to figure that out. I am worried about an allergic reaction to B1 as I have asthma and allergies (controlled with meds). I hope it will be fine. Happy new year to you too!

[Gioc in reply to Goldencbc]

I understand your worried about.

GIO

[Gioc in reply to Gioc]

I am a patient of dr C like many here in Italy, a good person, I see him once a year, but I could even do without it once understood how to use the b1, which is very personal, in the end everything will be fine for as it was for me, I'm sure. Greetings from Italy .Ciao Gio

[Despe in reply to Goldencbc]

I have had GERD for years. My gastroenterologist recommended gastroscopy every 2 years and prescribed omeprazole. The med is OK for a certain period of time but it comes with side effects, among others high blood pressure! I took matters into my hands, searched and found that ACID SOOTH chewable tablets by ENZYMEDICA are a natural med with pleasant taste and NO SIDE EFFECTS (contains zinc carnosine and probiotics.) I chew two tablets before my evening meal and haven't experienced any GERD problems for more than a year.

[Goldencbc in reply to Despe]

Thank you. I’ve looked it up and many stores have it. I will try it. I have been using Gaviscon and my Dr suggested Zantac but I don’t find it helpful. Do you use it daily?

[Despe in reply to Goldencbc]

Yes, I use it daily, two tablets before my evening meal. It protects the lining of the stomach unlike meds which interfere with stomach acid. Zantac and other meds make your stomach LAZY and doesn't excrete acid. Give it a try, I believe it will help you. If meds cause you GERD, have two tablets of Acid Sooth before you take your meds.

[Goldencbc]

Thanks. I’m interested to know why pantoprazole would help with tremor. Do you know?

[Gioc in reply to Goldencbc]

In my case the burning esophageal irritation is cause of disturbance of the state of mind, that is an annoying burning that prevents me from sleeping 8 hours spun.This creates an irritation that ignites the tremor. Like tiredness, flu, stress related to living, bullying people. The emotional reaction to these things temporarily ignites the tremor as well as reflux. I can not avoid living, but I can cure the acidity that is a big part.

that’s is really for you?

[Motherfather in reply to Gioc]

hi gio cas can you make choc chip cannabis cookies they will give you a good night sleep as they take awhile to go through the blood stream and easy to make helps with the pain as well.most things are worth trying.regards john.

[Gioc in reply to Motherfather]

Ah Ah Hi John, I think the main ingredient is not easily repeatable here. Among other things, I am not a supporter of certain substances. Thanks anyway for the advice.

[Goldencbc]

That makes sense. My hip pain makes my tremor worse. Take care. Carol

[Blue-jeans]

I took Selegiline from diagnosis for 8 years, unavailable now in South Africa, I am/was very happy with the slow progression of my symptoms. Started taking Madopar 125ml once daily. Good luck and keep exercising

[Farooqji in reply to Blue-jeans]

what is your dose of selegiline

[Goldencbc in reply to Farooqji]

5mg 2x day.

[Goldencbc in reply to Blue-jeans]

I see that carbidopa levodopa makes you nauseated too. It is hard to take even though it helps in other ways. I’m hoping B1 makes a difference. Carol

[UMass67]

I was diagnosed in late November. I found this website shortly after and added 2X100mg of B1to my 2Xc/l. I’m just writing to say I also had nausea with the c/l but decided to stick it out and the nausea ended after about six weeks. Good luck-these two things have me pretty much symptom free at this point.

[Goldencbc]

Thanks. I now take c/l continuous release at the same dose and frequency as you do and no longer have nausea. I also take 150 -200 mg of B1 and am on Selegiline. I have a mild tremor and other mild symptoms but B1 has improved many of them. My neurologist says she has clients doing well after 10-15 years on c/l. I was diagnosed last year. Best of luck. We all need it!