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homocysteine problems in PD

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Thank you Kathrynne,

 

Sorry for my misspellings, I was on a roll, with a little anger...could you tell?.lol

I emailed my Neuro following the first horrific weekend (when the light came on and I realized what was happening and all w /d sx hit again) he immediately wanted to see me. My husband who has been unbelievably the best, caring, up nights with me, worried, scared and angry, accompanied me to the appt. and doc said, " I feel responsible for this since I rx'd this, but I really think the benefits out way the risks to stay on this.... My husband said, No way, any drug that can do what she's been through cannot be of any benefit.

Doc backed down and said you may have some slight w/d for 2 weeks. I/ we said, it's already been 4 months! And another month later I emailed and told him I had found the benzo guru in our area and he confirmed my dx. then I messaged the same to my PCP and she said, well, this is the severest case I have heard of. She made me feel like I was being a whiner during this, since I kept calling and saying I just feel terrible...I have found a new PCP who does acupuncture and she leans more in the homeopathic direction. I will be seeing a new MDS at Beth Isreal -Boston in July. Time to move on..

Feeling great for 3 days, except for the insomnia, which I think is going to be with me for months. I will repost this on the forum, perhaps, it can help other members.

Your the best,

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Thank you Kathrynne,

 

Sorry for my misspellings, I was on a roll, with a little anger...could you tell?.lol

I emailed my Neuro following the first horrific weekend (when the light came on and I realized what was happening and all w /d sx hit again) he immediately wanted to see me. My husband who has been unbelievably the best, caring, up nights with me, worried, scared and angry, accompanied me to the appt. and doc said, " I feel responsible for this since I rx'd this, but I really think the benefits out way the risks to stay on this.... My husband said, No way, any drug that can do what she's been through cannot be of any benefit.

Doc backed down and said you may have some slight w/d for 2 weeks. I/ we said, it's already been 4 months! And another month later I emailed and told him I had found the benzo guru in our area and he confirmed my dx. then I messaged the same to my PCP and she said, well, this is the severest case I have heard of. She made me feel like I was being a whiner during this, since I kept calling and saying I just feel terrible...I have found a new PCP who does acupuncture and she leans more in the homeopathic direction. I will be seeing a new MDS at Beth Isreal -Boston in July. Time to move on..

Feeling great for 3 days, except for the insomnia, which I think is going to be with me for months. I will repost this on the forum, perhaps, it can help other members.

Your the best,

Once again, thank you Karen, for elaborating. I am encouraged that your neurologist accepted responsibility; but not encouraged that he actually believed the benefits were greater than the risks. And as for the PCP, I can only say that I'm thankful you switched to a new one, she is unbelievably callous. If only doctors went through what their patients have to go through, I am absolutely convinced they would be infinitely more understanding, compassionate, and willing to listen. Let them go without sleep for a few days and see if they still think it's a "slight withdrawal symptom."

 

I most sincerely hope that the insomnia will not last for months. I really like your new regime of chamomile, lavender, deep breathing; and I am a great believer in both acupuncture and reflexology, along with new doctors. I'm sure you are on the right track, and I hope the withdrawal will go more smoothly and quickly. Thanks again for updating us, It is valuable information for us all.

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My homocysteine came back normal.  5 umol/L.  Quick test.  

 

I can't tell you how happy that makes me! Thanks so very much for the information. This is a relatively new area for PD, and I think it's important to raise awareness, as elevated homocysteine is not necessarily thought to be a consideration in PD. I very much appreciate your updating us and congratulate you on the good news.

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