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About Curious

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  • Birthday 08/28/1980

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  1. Curious

    Hi.. Update and couple questions

    Glad to hear that Michael. Thank you Lethe and Texas Tom. I too have dystonia coinciding with Parkinson's disease. Had it before diagnosis or meds just never quite like that in my foot, but Lethe it did happen during the time I was increasing each dose of sinemet so I think you are correct. Hoping what I felt does not return. I may ask about comtan or something like it before doing my next increase of the sinemet. Although it greatly helps me and I am feeling better than I have in years I am worried about this continual increase considering my age and limited options later on. 6 hrs sounds pretty good Texas Tom hope it continues to help and that you find your perfect sweet spot.
  2. Hello all! I see a lot of posts about tremor dominant pd and pd where rigidity is more.. But what about when both are seen equally. Looking over my notes from mds when I was diagnosed and see in updrs lll motor exam and he has 2s and 3s marked in both tremor and rigidity sections. Also 3 in body bradykinesia.. Just wondering if anyone else seems to have them seemingly affect you equally.?? My rigidity has a higher score due to being seen in all limbs. I am also now taking 1 1/2 CD/LD 25/100mg 4xs a day. Seems my pd also shows not all young onset patients progress slowly. Pd is so individualized, as we all know but just wonder if anyone else presents this same way.. Reading my summary and visit notes and looking at myself through my mds eyes is a reality check in its own way. Not that it's a bad one, as it changes nothing and I have known how I feel for years now, just odd when reading about yourself.. One more question.. ????.. I had pain for a day and a half from just under my pinkie toe down the outside of my foot to heel, that was excruciating.. When I'd flex my toes it was worse. No injury at all.. Is this another type of foot dystonia? The pain disappeared as quickly as it came on. Thank you and hope everyone is well as can be.
  3. Curious

    Watch your teeth!

    LivingwithTau, thank you so much for your response. I truly appreciate it
  4. Curious

    Watch your teeth!

    This is great information. Thank you both very much. If you don't mind though I have a question, I know this thread is about teeth..so I am sorry to veer off but it does have to do with the mouth, I have looked for info but can't find any. Is it normal with dry mouth or maybe being on sinemet to get mouth sores? My mouth is very dry most the day now no matter how much I drink but what is really bothersome to me is I have developed a sore on both sides on the inside of my cheek. both seem to have a tiny hole in the middle and spread from there into little swollen sores. I have tried salt water (made mouth dryer), tried a specialized peroxide mouth rinse for dry mouth and sore(this agitated mouth), now I have been using antiseptic listerine and oragel for mouth sores. They seem to be getting better but slowly. I have never had a problem with my teeth or sore in my mouth so I am thinking it's the sinemet but I'm unsure. I also find my teeth are getting sensitive. Have any of you had similar problems or know if this is medication related and will go away?thank you
  5. Curious

    Essential Tremor or Parkinson's

    I was diagnosed with essential tremor, and am now diagnosed with pd, my tremor was never helped by barbituates or any of the other meds they tried. Sinemet was the only medicine that has ever helped them. Good luck to you
  6. Thank you Michael. I appreciate the welcome as well as your kind words.
  7. Curious

    Seems I've developed a rather odd gait

    Michael, I am so glad you found an answer. But a boobie prize with no boobies included.. Darn.. lol.. Hope your program helps you with it.. Thanks for the update.
  8. Welcome livingco Thank you all for your kind words and input. Like you all pretty much let me know, I am feeling so much better with the medicine and the side effects are quite minimal, I feel bad for complaining but was feeling so yucky to say the least. I did meet with and see my new mds last Tuesday. I am now "officially" diagnosed with Parkinson's disease. My mds has spent 30 plus years in his field and has numerous publications. To be honest I thought for sure he would feel I did not have Parkinson's disease and send me off for other tests. I was wrong. He spent over two hours with me and was quite thorough, he was a great listener as well as communicator. He amazed me as did the other doctor. He got me in quite quickly after going through my "story" paper trail of doctors and specialists. After meeting and shaking my hand he patted my shoulder told me how he has gone over my various findings and specialists notes and told me he is sorry I have been on such a long road. When we finished up he held my hand and told me he will do all he can to help start getting things going in my favor.. His first step was increasing my sinemet to 4 times a day. Right now I am at 3 full and half at bedtime on Wednesday I will be on the full four. This is helping me greatly but my gosh how I see the difference when I am needing my next dose. I knew my tremors were bad but it seems so bad when I go from having them minimally with it to needing the medicine. Anyway as I hoped he was great, I am so blessed to have met these last couple doctors after the experiences I have had. Their caring and compassion go above and beyond.. As for me I must admit I am having a bit of a hard time with this all being put in stone, contrary to most info I have found on young onset pd, mine is advanced and not progressing slowly.. This scares me a little but just go one day at a time.. I do realize this disease varies person to person..I have numerous books and pamphlets to read, seems they were my consolation prizeand a dozen more coming. With all this information given to me I do find I have learned the most from you guys, I thank you all for that.. There are no words for how much many of you have helped me and how thankful I am. I found your words and strength very helpful before but especially now. Anyway thanks again and hope you are all doing well
  9. Curious

    I got mad... over sinemet

    Agreed... You are awesome!
  10. Curious

    Seems I've developed a rather odd gait

    Michael, Not that I have a good answer but maybe it correlates.. I was seen by the mds on Tuesday and was asked if ever find myself going as though I can't stop and also asked about walking on my tip toes on right foot, maybe a link with the dystonia and gait issues? I only think that because my dystonia is seen much more on right side and he asked specificly about the right foot going on tip toes.. Maybe he seen something I haven't noticed.. Like I said not a good answer but possibly an idea..do you get dystonia on that side, or in that foot? If so maybe its linked.. Hoping you find an explanation.
  11. Curious

    Experiences With Being Diagnosed

    Jallenhull, Finding a good neurologist who will listen to you is so very hard. It can be a very frustrating and long road. I myself have seen quite a few and been told, essential tremor, the it's just in your head talk, to several other scenarios. It is degrading and such a let down to feel unheard and as if you don't matter. Please don't give up though, I assure you the right doctor, then neuro, then mds will come along it just can take a while. You will find this forum to be a welcoming spot for when you just need to talk, have questions, or need information.. Wishing you the best Musicman, nice pic Michael, I love how you put the "it's just in your head" into perspective.. The irony, lol..guess I never thought about it like that.. Great way to turn that around
  12. New normal, how happy I am to see a response from you.. I read what you wrote yesterday about becoming more of a lurker and the idea of no longer seeing your posts honestly saddened me. With that being said I am also very happy for you, getting out and involving yourself in the writing program you mentioned is wonderful.. Life is good, actually great, I am a firm believer in life situations are what you make of them. My attitude toward this is good, just finding myself a little worried about another specialist, the doctor I seen with his background and overall great attitude won me over, was hoping to keep him. I will try to stay positive in the meantime, and hope the mds is as good as him. Glad you say the side effects will lesson. Hearing you have the same body pain, regardless of medication lets me know that I am not alone and I will lower my expectations on it going away.. I think I may try a weighted heat blanket for my legs when they get so bad. As for exercise I am quite active in summer, as for right now these temps and side effects have me not feeling like doing much. Although I am quite avid about stretching my muscles.. I will press on and promise myself to do more starting Monday. As for today and the upcoming weekend, I foresee movies and board games and hopefully some rest. Again so glad to hear from you new normal. Hope you are doing well
  13. Well today is my sixth day on sinemet. The effect even this small dose has had on my tremors is pretty amazing. To someone who doesn't know me I am sure they would probly wonder why I am so shaky. But to me and my husband and those who know me, wow what a difference. Overall it's great to have such better use of my arms/hands, the aweful intention/action tremor on left side is a lot better as well.. As for my rigidity I notice a small change to the better. Now for my "ugh" as I am unsure how else to word this overall feeling of mixed side effects. My stomache has overall been yucky, nauseous and sour, but not aweful.. My head has this constant ache in my forehead but not pain.. The main thing bothering me is my body is hurting, shoulders, back, and legs.. I am hopeful this will subside.. And wonder if anyone else has had this? I looked it up and it is listed as side effects also spoke with specialist this morning (he called to check up on me) and he says this is normal and should go away.. I am grateful beyond belief for the relief in my parkinsons symptoms, just a lil frustrated with the side effects.. Yesterday was my worse day but it was also a really bad day for my legs, without the medicine my legs hurt so badly (they will hurt so badly with no rhyme or reason and then go for days feeling okay)so I'm not blaming the sinemet just was hopeful it would not happen with the medicine so when the pain reared its ugly head I think I was just a little let down. I do believe this pill is a small miracle, I am glad I do not up to full dose til next week, I was told this morning by specialist to take every five hours and see how that goes. So I will be doing that today and am feeling/trying to feel optimistic???? (This is an unrelated rant)..Speaking of specialists, I was also told this morning he is getting me in with mds, it will be sooner than later, hopefully in next month. Anyway we talked about parkinsons and he said that what he feels it is from my exam as many of my tests point in that direction, the tremors and cogwheeling are huge indicators, so that's why I'm being treated with sinemet, and my good results from the med are very standard for the diagnosis, but then he added in its my "unofficial" diagnosis (adding in his diagnosis I seen is just what I "feature" parkinsons, primary)until I am seen by his colleague.. Boy, I was already feeling tired and frustrated, just hoping I do not somehow end up being jerked around.. Of course I want an answer and the answer doesn't change me but I have seen so many doctors who left me feeling let down and with more questions than answers.. Here's to hoping the mds is as wonderful as the neuromuscular specialist whom has finally helped me... Hope anyone reading is doing well and hoping anyone wondering about or taking sinemet can maybe relate, give me any info on what they've dealt with, or find any of my update useful.
  14. Curious

    "Imported" Azilect

    Good morning, sorry to hear how expensive your medication is mm. I agree with johnnys, I too have no experience with foreign medications, but I agree there is no way of knowing what's in them or what you are actually being sent. Our medication is regulated (although, it seems that's not always well done) but at least you and your doc know what you are putting in your body. It's hard to say though, it could be the same thing as what you get now or it could really cost your health and the money saved may be money thrown out. It's not worth your health if it's a bust. Wishing you the best musicman.
  15. Curious

    Finally seeing a MDS at UCSF *UPDATE*

    Good luck Bills. Hope your doctor is wonderful.