Neurologist Examination

Neurologist exam this morning, 1/9/2020, review:

I was diagnosed 2012

Bedtime C/L 50-200 ER: Because it is ER, I take with or w/o food.

5 x day C/L 25 - 100 IR: 6:30, 9:30, 12:30, 3:30, 6:30

B1 (8 am 2g, and 12:30 pm 2g) vitamin B1 as thiamine HCL. 500mg, easy swallow capsules

Assessment and Plan:

1. Parkinson’s disease – This very pleasant 72-year-old gentleman who has at least an eight year history of tremor specific Parkinson disease H and Y stage II has overall done very well in his clinical course. However, I think that we could try to work on medical treatment of his tremor. At this time (referring to thirty days earlier) taking no more than four hundred mg total of carbidopa levodopa separated by 12 hours. Have spoken to husband and wife that levodopa definitively most helpful with tremor over any other dopamine agonist or amantadine and that we await for him to optimize this first. (see current/optimization dose recommendation at beginning of this note). Additionally, his disease type would also respond very well to DBS (considering that levodopa is effective for his tremor)

Encouraged to take 50/200 ER at his usual bedtime of about 10:30 at night explaining to him that it would be better physiologically for him to not go 12 hours without C/L. As an alternative, did suggest that he could take short acting C/L if he gets up in the early morning to go to the bathroom and then goes back to bed.

2. REM sleep behavior disorder – We spoke today about the fact that he has somewhat violent dreams at night. We talked about the use of melatonin. To take 10mg of melatonin about 6:30 when he takes his evening dose of C/L. After a week they do not see an improvement in this, they are going to get in touch with me and we will try clonazepam.

3. Neuropathy – patient complains of numb toes. Is already taking supra tx doses of B1. All labs that we ordered in between this visit and last including ESR, CRP, SPEP, ANA, vitamin B12 and folate have returned normal. Thyroid function had been tested prior to this visit was normal. Suggest that this is likely idiopathic especially since it has been ongoing for some time. Explained to family about this and offered handout on this very unfortunate common condition. Suggested vitamin D3 supplementation 2000 IU to 4000 IU daily. Also emphasized that supratherapeutic doses of D3 can be harmful.

[Stevenmast]

Hi Roy! I'm just curious have you ever tried mucuna in place of any of your C/L doses? It works really well for me when it comes to tremors! Like anything else you have to find the right dose but I would recommend the pure variety.

[Hidden in reply to Stevenmast]

I tried. Bottle of it sitting on the shelf

[Stevenmast in reply to Hidden]

You're not alone I've got quite a few supplements that I buy and just take a few. Need the pure l-dopa if you're going to do it. I'm shaking quite a bit right now while I'm dictating my text and drinking my cup of coffee with mucuna. Within 25 minutes or so I'll be perfectly calm. Good luck Roy sounds like you're doing well!

[tandolino in reply to Stevenmast]

Where do you buy pure l-dopa? how much do you take?

[Stevenmast in reply to tandolino]

Nutrivitashop.com

search l-dopa

[WinnieThePoo]

Sounds good Roy. I saw my clinical neurologist for the first time since October 2018, and the first time since being referred by her to the SPARK trial. It was week 48 of the trial - the last before it changes to 1250 or 3500 mg next month and I am allowed to take conventional medication. She has suggested I try a low dose of pramipexole extended release to start with. Starting in March

[JRltd]

Roy, I was dx in 2013 and on a similar daily regimen

5x day 1ea c/l 25/100 IR & 1 ea c/l 25/100 ER @ 6,9,12,3,6

Wake up 10-12 to go to bathroom & take .5 IR & .5 ER

I use 10 mg melatonin dissolving tablets for sleep

The only problem I have is sick to my stomach all the time. Do you have that side effect

[Hidden in reply to JRltd]

no

[PDGal4 in reply to JRltd]

Did you ask your doctor to prescribe extra carbidopa to take with you C/L to help with the nausea/vomiting?

[Hidden in reply to PDGal4]

No. Vomiting never issue

[PDGal4 in reply to Hidden]

Oops, meant for JRltd. I will repost.

[JRltd in reply to PDGal4]

No...I didnt know that would help. I will ask. Thanx

[PDGal4 in reply to JRltd]

Did you ask your doctor to prescribe extra carbidopa to take with you C/L to help with the nausea/vomiting?

[Hidden]

Hi RoyProp:

I find this statement very interesting: "...explaining to him that it would be better physiologically for him to not go 12 hours without C/L"

What exactly was the explanation?

Thanks

[Hidden in reply to Hidden]

avoid highs and lows. Even out the L-dopa level.

[weekapaw]

Please be very careful with Pramapexol, or any agonist. It can make you very OCD. I get mood swings from it. Three out of 4 Parkies I know who took an agonist developed Obsessions that were Financially challenging.