What in blue hell...

[Bonnie51462]

I have pulled muscles in my past but I noticed about half hour to an hour after I take my carbadopa levadopa I sometimes get this muscles spasm in my ring finger on my left side (where my PD started) and now I was lying in bed when all of a sudden my abdomen from rib to lower belly tightened up in a HUGE painful bulges, hard then soft then hard again for about 5 minutes I was howling in pain as the only time I felt anywhere near this is birth and you expect that... I noticed the hand and figured dystonia but being on Medicare I need to wait until I can get $$$ up for a visit...Then it's probably more meds...UGH PD isn't for the weak...

[Bonnie51462]

Sort of rolling from the ribs to lower belly they would contract and release but started at the ribs and went to the belly while the ribs were easing the belly would contract and vice versa ...kinda reminds me of a snake come to think of it, hurt like hell...was trying not to scream I was worried someone would call the police

[Bonnie51462]

I was thinking it was from the simnet , I was reading about dystonia from medication...I hope your insurance will pay for your meds...I had the same problem with my insurance not wanting to pay for my heart medication, the one was cheaper so they put me on it...Until I was diagnosed with congestive heart failure Which is why my doctor wanted the more expensive one as my heart issues can be made worse if not tightly controlled...Good luck with your insurance, I've been on simnet for almost 8 yrs I think....

[Hikoi in reply to Bonnie51462]

Bonnie

That sounds like dystonia of the abdominal muscles. Very painful, the treatment isnt necessarily more meds, it is usually reducing dose of carb/lev and taking more often if necessary.

Dystonia pain is awful, do hope your neuro can help you.

[JohnPepper]

Hi Bonnie. When I was taking an MAO-b inhibitor, back in the 90s, I went onto a high protein diet and the same thing happened to me. I landed up in hospital in absolute agony. That was caused by the meds, which reacted badly to the high protein. Are you on an MAO-b inhibitor?

[Bonnie51462 in reply to JohnPepper]

No, I'm on a bp med lisinopril, hyralazine, metoprolol, lasix, simnet, pravastatin, prilosec I trimmed down my meds, I used to take cymbalta, for my arthritis but stopped a few years ago as my stomach issues were getting worse also stopped the aspirin for the same reason I am trying for just the bare bones of meds...I also am on insulin which is why the prilosec my GP thinks I may be developing gastroparisis (sp)

[JohnPepper in reply to Bonnie51462]

Hi Bonnie. That sounds like an awful lot of medication to me. Is the insulin for diabetes?

[Bonnie51462 in reply to JohnPepper]

yes I have diabetes most of my meds are for a congenital heart defect which was untreated (no insurance for years so I saw a GP which did what she could) it developed into congestive heart failure, the doctors walk a fine line because I have a low heart rate to begin with so they keep it tightly controlled or it could cause a heart attack or stroke my defect is now operated on a few days after birth (my grandson had the same defect) when I was born my doctors thought at the time that it corrects itself (it can but not in my case)...so they never worried about it also was diagnosed with arthritis at 5 my Rhumatologist believes it also was at birth as I didn't walk until well after 3 my parents thought I was lazy (they said a ped. told them) so I have never known a day without pain, like the old saying goes if I woke up pain free I'd think I was dead lol...

[JohnPepper in reply to Bonnie51462]

Hi Bonnie. You are incredibly brave! But if you want to live, you have to be brave. I take my hat off to you and wish you the very best of luck and better health.

[Bonnie51462 in reply to JohnPepper]

Thanks but we all are brave we all fight a battle no one sees, I take my hat off to all who has an invisible illness, or visible illness everyone has something in their lives to keep them moving I have a dark sense of humor and my family I am blessed kind people such as yourself replied to my problem...

[Sunshinej]

less meds not more. better to find out what caused you to develop parkinsons look at toxins( organophosates and many more are known causes the medical establishment already knows this ) what have you been exposed to.just google it you will get a list google scholarly for scientific papers.. also see if mannitol will help.plus clean up your diet dont eat processed foods people who try this approach get improvement

[Bonnie51462 in reply to Sunshinej]

used to work in a shoe factory been exposed to several factors but my sister who didn't work also had PD so it's more than likely genetic as well as my Mom who I suspect has it but refuses to see a doctor

[Boyce3600 in reply to Sunshinej]

You mention causes that the medical establishment knows. Can u elaborate, please?

[Sunshinej in reply to Boyce3600]

its well known that certain toxins make people more likely to develope parkinsons theres and area in america where they spray glycophosate alot as its crop producing . they spray it at the end of growth then the crop is havrvested its not biodegradable it takes years to issipate animals then ingest it and it is found in their milk . in the area of the states where they do this parkinsons is very common because glycophosate is one of the known toxins that cause parkinsons ..unless u eat organic ect u are likely to be ingesting it . theres a good youtube video about this by stephanie seneff she and anthony samsel have done alot of work re glyphosate and how its poisoning the planet . if you dont know what it is its also known as roundup and it is well recogniced by the medics that agricultural workers working with this often get parkinsons....

but it isnt the only toxin that causes it ......

[WtjrBill]

Bonnie, I had something similar happen to me. When I would take my carb/levodopa (sinemet) about 30 min. after my head would start twisting. It felt like it was coming off! About the third trip to the doctors office, it happened when I was there. They called it drug induced dystonia. Now I mix my carb/leva with ginger ale and sip on it all day. It works. Good luck.

[park_bear in reply to WtjrBill]

You have created your own time release version of C/L. I have found there is a tremendous difference between the time release and immediate release versions.

[Beckey in reply to park_bear]

I was acting on your recommendation when I asked my doc about timed release. I just started on it. Too soon to say what the effect is, but within just a few days of starting the "regular" C/L, I had unpleasant side effects, so at this point, I say "so far, so good."

[Bonnie51462 in reply to WtjrBill]

Thank you WtjrBill

[Sunshinej]

roundup that weed killer they tell you is non toxic destroys gut bacteria etc check out autism state of the union 2017 on youtube as it isnt just about that and gives good explanation about what it does.if you have gut problems this could be relevant..