I really need some advice. I think perhaps some of my symptoms may be caused by one or more of my medications. I received a DAT SCAN (showed loss of dopamine in the right and left side of my brain) in 2015 confirming that I have Parkinson's but because my progression seems to be faster than most ,my dr said I have parkinsonism ( some PSP qualities)..
I feel like I have every symptom under the sun . My loss of balance and freezing of gait are my biggest problems. I have problems with my speech, my handwriting is illegible, tremors on the left hand and leg. I also have problems with my eyes. I am very sensitive to bright lights, like the sun, and they will close making it difficult to open. I go for Botox shots . They work wonderfully for about a month and then my symptoms slowly start to reappear. I have rigidity on my right side.
I am currently taking
1. CL every 3 hrs , 4x per day ( 8am - 5pm )
2. Selegeline ( between 8-10am)
3. Venlaxafine 1 pill (150mg) 9am
4. I take on occasion calcium & D3, B6, B12, B1, Tumeric,
Always take fish oil, probiotic and magnesium
I have tried the Thiamine B1 hoh dose protocol with Dr. C. I was able to get a few good days but nothing very consistent. I hagetve been trying to clean up my gut and go back to having a dainly BM.. Those things are better but have not bee able to get the correct dose of B1 so I stopped taking it.
I was on Amantadine but had to stop bc it was causing terrible swelling in my ankles and feet.
I feel the best when I get up in the morning. Once I start with the CL, my speech and my walking get worse. And around the time I go to bed Around 10PM i can usually walk a lot better. Not perfect but a bit better.
Questions
#1 . Do I need separate the selegeline dosages by a certain # of hours??. I have been taking selegeline 1x per day , bc if I take it past 1pm. I cant sleep. My dr. knows I only take wi1x per day.
But I have read here y have to take it 2x per day to in order to slow down the progression.
#2. Is it possible for the venlaxafine ( anxiety)to be the root of my gait or balance problems?
I have decreased my dosage from 150mg to 75mg ( w GP) and my legs do not feel as heavy pre taking the medication.
#3. Is it possible for the C/L to affect my speech??
My speech is also not consistent. I have been doing a lot of observing of my body lately and I notice that my speech seems to get worse after each dose of CL.
By 5pm icannot speak comprehensively nor can I walk easily.
Maybe i am crazy, but i was hoping someone could shed some light on these questions.
Thank you so much
Monica