Oh the pain…

[Godiv]

I keep meaning to ask this because I’ve talk to my doctor about it and for some reason I don’t seem to be conveying what’s happening. But I think it’s dystonia. Anyway, as levodopa wears off, it’s almost like my stomach hurts very deeply. Almost like kind of cramps. It’s not like the diarrhea cramps, but sometimes I do go. But I’m not sick or anything like that when it happens. TMI I know. But this is very painful. There’s some cramping in one of my feet but the stomach colon thing seems worse. I almost feel faint. Definitely usually is lack of medication because I lose balance and can’t walk. And a very parkinsonian fashion. Anyway thank you so much! I appreciate your thoughts.

[House2]

sounds like it could be gastroparesis

[Godiv in reply to House2]

Thank you. That’s a thought. But I think my stomach empties OK. So I’m not sure but I’ll check into it. I appreciate the suggestion!!

[park_bear]

Wearing off dystonia has been noted in the literature.

[Godiv in reply to park_bear]

OK thank you Park. Just happens to take a weird uncomfortable form apparently

[jeffmayer]

Do you think you could be under dosed

[Godiv in reply to jeffmayer]

I don’t think so. But I appreciate your mentioning it. I just problems time is at the end of the last dose. But once everything is back in I’m OK. Thank you though.

[beehive23]

very possibly a wearing off effect...go with the evidence you have...hang tough.

[Godiv]

Okey-dokey. Thank you. I appreciate the help. You hang tough also!

[JerryinSATX]

I don’t get the cramping you do but was noticing my tremors creeping back a bit before my next dose of C/L (2 pills of 25/100 every 5 hours). I have added a half pill 1 hour before my next dose and that seems to level things off for me.

Hope you start feeling better.

[Godiv in reply to JerryinSATX]

Thank you so much. I think it’s great you’re taking care of yourself with an extra boost when you need it. My doctor discourages me from doing that.

It drives me crazy, but I know it’s probably for my own good. It’s an effort to, since I’m already at a high-level, keep the total for the day as low as possible. I guess figuring I’ll be on it for a long time

But there is that quality-of-life issue

Thanks so much. I’ll talk to the doctor again.

[JerryinSATX]

My neurologist says he trusts me to know my body and will adjust my meds as I see fit (so far).

[Godiv in reply to JerryinSATX]

That’s wonderful and I think how it should be. I’m not quite sure about the situation I’m in. But you’re doing it with his knowledge so that’s perfect.I wish I could find someone like that. A laid-back rockstar neurologist or MDS who does telehealth.

[enjoy2013]

I think your neurologist expects you to let them know if something is wrong and then they will propose you a solution. Otherwise just do it

[Godiv in reply to enjoy2013]

I have, thank you. Maybe I’m not communicating well to the doctor. So I’ll try again. Thanks so much!

[enjoy2013]

They should make sure no other cause of abdominal pain

[Godiv]

I agree. I’m for another opinion. Perhaps some of the issue is the narrow focus of specialists.

A good start will be talking to my GP. I’m going in very soon anyway:-).