Tuesday, March 5, 2019

Neurologist: OK to try pot for neuropathy

I've been so busy trying out my medical marijuana that I forgot to post. 

A couple of times I took a little too much and was not happy about it. The solution seems to be finding the right combination of CBD and THC and then doing mini doses.

Actually I keep starting to write and then going on to some other thing, so, before I drift away again, here's the scoop. The neurologist in Boston is all for experimenting with pot, and he left it up to me to decide how much to use and whether it gives me enough benefit to be able to cut back on the gabapentin. In Livestrong, several of the women who are taking it for pain were not surprised. One said that with no research to draw on, doctors want patients to tell them what works. 

Dr. David Matthew Pilgrim backed that up. He said that patients say it works, so he is all for it. He said that my dosage of gabapentin, 1500 mgs. a day, is in the medium range and if the pot doesn't work, I can increase it. It would be a lot easier to manage if it were as simple as saying "take two aspirin and call me in the morning." Nobody seems totally certain what to do about it.

In any case, the visit with Dr. Pilgrim was reassuring. 

He has a big title: Chief, Clinical Neurology, Brigham and Women's Faulkner Hospital
Instructor, Harvard Medical School, yet I never saw a doctor so friendly, warm, open and down-to-earth. It was the first time a doctor ever came out to the waiting room to get me. We had a lot in common, both native New Yorkers, and he went to high school a block from my alma mater, Friends Seminary. He grew up in Crown Heights, where Katie lives, and he went to Amherst College. We talked for so long that I don't know how he gets all his patients in. Judging from his reviews, he gives the same care and attention to everyone. I left with a smile after having such a pleasant visit. 

He grew up in the 60s, and I wonder if his acceptance of marijuana is due to his age. I know that Dr. Alyea, who is younger and from a different part of the country, is not a fan. 

It was a little odd to read the note about me that came through on Patient Gateway:

This 64-year-old right-handed woman with a history of AML, bone marrow transplant, graft-versus-host disease and treatment with chemotherapy has had 10 years of fluctuating numb and tingling feet.  They sometimes feel like she is walking on eggshells or that an electric current is present.

Appropriately dressed and well groomed. No pedal edema.  She has a skin rash consistent with graft-versus-host disease.  MS Awake, alert, attentive. Oriented X 3. Normal language and memory.

This patient has a generalized neuropathy likely related to chemotherapy and possibly graft-versus-host disease.  Her symptoms are well managed with gabapentin and medical marijuana.  I recommend that she continue to experiment with the medical marijuana and if the symptoms improve, she can lower the gabapentin dose in 300 mg increments as tolerated.

If the symptoms worsen, we should increase the gabapentin dose.  I explained that the gabapentin dose can be pushed as high as 900 mg 4 times daily.

In my opinion it is not exactly well-managed, or else I wouldn't still be looking for more help. Having an electric current running through your feet is not the best way to get through your day. I imagine he has seen people who have it worse, and I know of some who do.

I told him that it bothers me less when I play tennis; I assume that moving around helps the circulation, moving faster helps my balance, and concentrating on the ball keeps my mind off my feet. I told him that sometimes people say I walk funny, which I don't appreciate, because I didn't ask. He had me walk, then jog, down the hall, and he confirmed that when I move faster, my gait is closer to normal.

The other part of his prescription is to play more tennis. I said I would love to do it but I can't afford to play much more. In the summer I don't have to pay for court time but then I run into the problem of getting too much sun.

Speaking of summer, here's something I wrote about Tom Brady's misconceived ideas about sun protection: Penalty on Tom Brady for Sun Protection advice.


Unknown said...

Hello again, Runder-Woman,
"Appropriately dressed!?"
Your beautiful dog is "well-groomed."
As we say in Russian, the world is crowded, not small!
I too am on Gabapentin for sleep apnea and PTSD!
or general anxiety. Also neuropathy in one foot from chemo. So far so good for this left-handed woman (why right-handed?!!)
You are so brave, so like your wonderful, sustaining parents, and charming as well! xop

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