Great neurology appt: The oncology... - SHARE Metastatic ...

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Great neurology appt

PJBinMI profile image
15 Replies

The oncology palliative care NP that I see occasionally suggested I be evaluated by a neurologist as I expressed concern about my neuropathy, balance and memory. She's prescribed extremely helpful meds for side effects, spends alot of time talking with and listening to me and I trust her alot. My balance has gone down hill since I was hospitalized last fall and I use a walker when I go out and some at home. I saw the neurologist this past week, much sooner than I expected because they had a cancelation. My husband and I both liked him alot! He spent almost an hour with us, did some testing and ordered some bloodwork and further testing of the neuropathy, but told me that my memory issues are very consistent with my age (77) and do not resemble any kind of dementia! The best news I've had in a longtime. He also toldme that the area were I had one brain met, on the surface of the right cerebellum, with stereotactic radiation treatment, is the part of the brain that handles balance, and that the exercisesI've been given are the only thing likely to help. Vit B might help but he wants to see my blood levels first. I asked about the various stuff advertised for neuropathy and he said thet those aren't helpful. I left feeling relieved and happy! Now I need to make daily exercise a priority, sigh! I'm more of a thinker, reader, studier than athlete, lol!

One of the few good things about having MBC, at least in my experience, is that it often gets me appointments weeks, and even months, sooner than if I didn't! So when I talk with schedulers, I make sure to mention it!

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PJBinMI profile image
PJBinMI
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15 Replies
bubblystream profile image
bubblystream

you got a lot of good news! I am very interested in hearing what they say about your neuropathy. I have it in my feet since being on taxol for 6months. I stopped on March 1st. My feet are 50% better. In fact in the last 2weeks I feel they have gotten worse without me being on Iv chemo. They feel like “plastic” haha. I can walk but pay attention to not loose my balance. I am active 69 year old. I will look forward to all you learn.

PJBinMI profile image
PJBinMI in reply to bubblystream

Ask if physical therapy can helpwith your balance. PT hashelped me alot!

love2golfwell profile image
love2golfwell

So happy you had good news and some solutions to manage the issues you were facing. Hope the exercises help. Take care. Sending hugs and prayers.

mariootsi profile image
mariootsi

So happy you had good and helpful appointments with your neurologists.

mariootsi profile image
mariootsi

I will be seeing a neurologist also. Hope he is as helpful as yours are. So good to get good news!

PJBinMI profile image
PJBinMI in reply to mariootsi

I hope your neurologist is asgreat asthe one Isaw! Theysure vary. Keep us posted.

mariootsi profile image
mariootsi in reply to PJBinMI

I will

fancydog profile image
fancydog

My recent health decline, 20# wt loss, hospitalization showed me how terrible my arthritis has become. Numb toes and fingers are probably related to arthritic compression on joints. Just FYI and I'm 64 still!

13plus profile image
13plus

Sounds like a really good neurologist. And then you know the saying - if you don’t use it, you lose it! So true. I used to run an exercise program for cancer survivors. It can be really amazing, for some, how much their neuropathy improves with exercise (and balance of course). It was uplifting to get such uplifting responses from those who participated.

Put on some music and make fun with those exercises! Sometimes people can also get an improved response by rubbing the soles of the feet or exercising on a piece of like scratchier-type pf carpet. The sensation stimulates the nerves. We have more sensory nerves in the soles of our feet than anywhere else in the body!

TammyCross profile image
TammyCross in reply to 13plus

"Moving for Life," a dance/exercise for cancer survivors, has free virtual classes every day. The program is based in NYC, but if the time zone works, it is recommended. They accommodate all abilities and disabilities. The program is based on physiology and biology, created by Dr. Martha Eddy. They do balance work, too.

13plus profile image
13plus in reply to TammyCross

Yes, that’s another great program, and it’s wonderful that they offer it free online. I used to run “Livestrong at The Y”’s 12 week program, also free for all cancer types and abilities, which was teaching participants at any stage of their cancer journey (with doc approval) how to build cardio and strength and improve nutrition, so a different type of format. (Anyone can go to the Livestrong website- which has great resources and information online, to find a YMCA near them to apply to join the program. Unfortunately the pandemic put a long halt on our offering.

TammyCross profile image
TammyCross in reply to 13plus

I was doing LiveStrong at a Y. Loved it. When the pandemic hit, that class was the last to stop in person classes. Crazy, since we were a vulnerable group. Then there were classes available on line for a while, but they shut them down to make us join the Y (expensive).

MiataMama profile image
MiataMama

Great news. Gives me hope for my 74 year old memory lapses. I do cancer rehab pt focusing on balance and strength plus she has me doing memory exercises as I work on balance. I also participate in an on-line program, Stronger thru Cancer which offers virtual classes including balance, strength, cardio, yoga and mindfulness all designed with the issues we are facing. Everything has improved and I can do things I hadn't attempted in a long time. I spent the morning with a group of 14 first graders which included a lot of stairs and getting up and down from the floor for circle time. Loved every minute. Keep doing those exercises. I get in four minutes of balance a day standing on alternate feet while I brush my teeth.

viennagirl profile image
viennagirl in reply to MiataMama

I will try that balance exercise. Always have to brush my teeth so doing the exercise will become and easy habit. Thank you. Marlene

viennagirl profile image
viennagirl

Good luck with your medications and for sharing this information with us. I have balance issues too so will try taking Vitamin B. I sure hope it helps with my balance. I am afraid of falling because I also have osteoporosis. Thank you. Hugs Marlene

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