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Cece last won the day on August 12 2015

Cece had the most liked content!

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About Cece

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  • Birthday 09/27/1952

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  1. Dr Okun I had an EGD Monday. I was given Demerol and Versed and had it at 12:00 pm I did noi have any PD symptoms until about 10:00 pm. Is the Demerol and Versed the reason? I felt like I did not have PD. When I got up the next morning, all of the PD symptoms had returned. Is there correlation between the drugs and masking of PD symptoms? I have had PD for 3 years.i feel like my symptoms are on a fast track. I switched to Rytary 11/17/16 from Sinemet so I would have more time between doses from 3 1/2 hrs to 5 hrs. I still have uncontrollable tremors,stiffness, dyskinesia, dystonia, unstable balance, neuropathy of hands and feet, nausea, vomiting, GERD stomach pain and constipation I am having a gastric emptying test tomorrow I did not have the stomach issues until after I started Rytary. My MDS does not want to make any changes to med until the GI dr determines a diagnosis. Do you have any recommendations to help me?? Thank you for your consideration. I appreciate all you do to support PD patients
  2. Cece

    Tamiflu Response with PD

    Pathfinder How terrible for your DH and you to go thru this. I copied the below information on Drugs.com. It is side affects for Tamiflu. Hope DH is ok. Common (1% to 10%): Insomnia Frequency not reported: Mania Postmarketing reports: Abnormal behavior, delirium, altered level of consciousness, confusion, delusions, hallucinations, agitation, anxiety, nightmares, self-injury[Ref] Influenza can be associated with various neurologic and behavioral symptoms (including hallucinations, delirium, abnormal behavior), with fatal outcomes in some cases; such events may occur with encephalitis or encephalopathy but can occur without obvious severe disease. There are postmarketing reports (mostly in Japan) of delirium and abnormal behavior leading to injury, with fatal outcomes in some cases, in influenza patients using this drug. Although frequency is unknown, based on usage, these events appear uncommon. These events were primarily reported in pediatric patients, often with abrupt onset and rapid resolution. The contribution of this drug to such events has not been established.
  3. Cece

    Rytary update

    Pathfinder I just posted you a response and lost it! Thank you for taking the time to provide me with useful information.I don't feel you are a Debbie Downer. I appreciate getting the facts. I have much respect for you,and all other caregivers for all the dedication, care and love you give. I.hope your DH is feeling better each day and will not need the Botox shots. I take Zofran (generic Ondansetron) for nausea and vomiting. The Dr will not let me take Reglan(generic Metoclorpramide) as he said it has adverse affects my Parkinson's. I can't wait until it is i over because my MDS will not address/change my Rytary dosage until the GI dr makes his final diagnosis and plan of carr for my stomach. "Too much Rytary gives me dyskinesia and lessor dose causes tremors and dystonia Thanks so much and please take care. ..
  4. Cece

    Rytary update

    Thanks for the info. I hope your DH is not in pain and doing ok. Before Rytary, i took C/L 250 mg every 3 hrs 5 times a day. I didn't eat 1 hr before or after med. With Rytary I eat 1 1/2 hrs before and after med. I hardly eat protein. The MDS Sent me an email said I was anemic and to add B12 pill and she will retest me in April. if you don't mind my asking, does your DH adhere to a specific diet or tak any meds for it? I am taking taking omeprazole ,ranitidine, Carafate and Ondansetron for stomach and Amitiza for constipation. I think some,of my stomach pain is caused by the number of Rytary pills I have to take. OnC/L, I took 5 pills a day and on Rytary I take 12 pills. After I started Rytary 11/17/16, a couple weeks later I had to start taking omeprazole. On 12/16/16, during my appt with the MDS,Iold her about my stomach pain. and they made me an appt with a gastro dr for 4/19/17. I kept calling the gsstro office and my appt. was changed to 3/2/17. I was on a cancellarion list from day one. I started throwing up 1/26/17 and could not eat. I called my PCP and the office made me an appt with another gsstro, dr 2/16/17. I went to my PCP on 2/2/17 and I was sent to ER.and all they did was give me more stomxach med. On 2/4/17 I wenr to ER because I was in pain from stomxh to mouth and could not swallow. They numbed my throat with lidocaine. On 2/11/17 I went to ER with abdominal pain and they said I did not have a blockage, and I needed to wait and see gastro dr on 2/16/17 for further treatment. So now I am waiting to have an EGD and a gastric emptying test. I hope the dr can help me. I m so tired of ll the meds.
  5. Cece

    Rytary update

    CONGRATULATIONS STUMP!!!! This is the best news I have heard in a long time. Good to hear the med is working for you too. Take advantage of the program. Your dererve and earned it. I hope you will qualify next Year and thereafter. I just hope the Gi dr determines why my meds are not working, possible gastroparesis. The MDS gave me material about the Duopa pump. I have been following.Beau's mom - Diane's posts about her pump ever since she got it. I think she is a much stronger person than I am. I admire her strength and perseverance. I feel like my PD has been on the fast track ever since I have been diagnosed. I am happy for anyone on the forum that has good news to post. Maybe I will have good news after the GI dr determines my problem so i can get better and Rytary helps my tremors, stiffness and dystonia. After my stomach gets betterr. I will go back to Physical Medicine And Rehab Dr about the neuropathy in my hands and feet. He recommended a TENS.Unit.
  6. Cece

    Rytary update

    Thanks Stump. It would have cost me about $1100.00 a month without insurance and we are retired. I started taking it 11/17/16. I take 12 pills a day.4 times, 2 195s and 1 145 three times a day and and 3 195s the 4th dose. I not sure if it helps because I am having Gi issues, and am scheduled for EGD scope and gastric emptying test. I am tremor dominate and still have tremors. I am unable to take 3 pills 195 mg per the conversion chart because I get dyskinesia of mouth. Have you or anyone else have side affects caused by Rytary?
  7. Cece

    Rytary update

    Stump,or anyone interested Even if you have applied for the My Rytary Patient Assistance Program, and/or have pharmacy coverage, please contact the Impax Connect Helpline at 844-367-2928. Rytary was not covered by my insurance. They contacted my insurance and MDS,had paperwork completed, andnow it's covered. They provided me with Rytary at no cost via my pharmacy during the review Stump, you may already be in contact with them since you got med at no cost. I have turned into a lurker since I have developed neuropathy in my hands and feet. I enjoy reading the posts Have a nice evening.
  8. Cece

    Good morning!!

    Dianne Heartfelt condolences to you and your family. May memories of your son comfort you during this dfifficult time. Many healing thoughts and prayers come your way. Hugs CC
  9. Cece


    Hi Mark I take my last dose C/L 25/250 mg every night at 10 pm. When I wake up the next morning I am so stiff (can't move). It usually takes an hour before my med kicks in. I take my first morning dose at 8 am.and then every 3 1/2 hrs. I thought the MDS said the reason I am stiff is because the.C/L has worn off. As stated above, my brain should be storing dopamine when I am asleep. Is my brain not storing dopamine at night as it should? Do you think I may have anther problem? I would appreciate your thoughts about this Thanks in advance.
  10. Cece

    PD Specialist praise

    Bakestein Please check this website http://profiles.utsouthwestern.edu/profile/35895/padraig-osuilleabhain.html
  11. Cece

    Whole body vibration machine

    Hi Discovery, Unable to type much but wanted to know how you session turned ou CC
  12. Cece

    Insides quivering

    Hi. NN Thanks for all the suggestions!! I can relate to tremors inside and out. I am not able to type much because the ends of my fingers burn whenever touching the surface of anything. Grunt. I finally got a call from MDS nurse I am starting Lyrica today. I hope it is not the evil sister of Neurontin. CC
  13. Cece

    Saliva and pineapple??

    Keep the faith!!!
  14. Cece

    Insides quivering

    Hi Grunt I talked to the nurse yesterday . She sent a message to the.MDS asking if I can try Lyrica. I hope to hear back today. The MDS increased the Neurontin to 1600 mg a day. My MDS is out on maternity leave so I am trying to get answers from a Dr I have never met. Problem is the they are the only MDS physician in Indy area. Tired of all the pills. Think I need something than beef for this neuropathy. Maybe I need to pour white lightning on my hand. Lol! Take care and hope all is well for you. CC
  15. Cece

    Saliva and pineapple??

    NN You and your DH are in my thoughts. Know you will wil keep up a good positive as you are a strong person based on your posts. Wishing you the best CC