Dr Grubb

[Ernie]

Hi,

For those of you who have been seeing him during the past year, would it be possible to have an idea of the latest meds that Dr Grubb is prescribing?.

Thank you.

[PattiL]

Mestinon was the latest thing he prescribed for Chrissy ( in Dec.), it really helped with her showers, heat tolerance, etc., BUT she started having some bad stomach problems--- diarrhea. It was one of those situations of, do I want to take a shower, but not be able to leave the house, or leave the house and not take a shower! It think she's going to try it again once she's done with her latest episode of symptoms from another med.

Patti

[Megan]

Since I've been seeing him I've been put on Midodrine, Florinef, and most recently Mestinon, although technically Bev put me on that one. (I'm still on all of them) The Mestinon is kind of tough on the stomach, especially if you don't eat before you take it.

[Ernie]

Thanks Patti and Meg for answering my post.

Usually he is trying a new medication every year but it does not seem that he is trying a new med this year?

[Sunfish]

hi ernie -

i've spoken with dr. grubb recently and based on that & my own familiarity with the research, i don't think there are really any new meds available to dr. grubb (or any of the specialists for that matter) to try. there may be slight variations, i.e. the daytrana patch instead of ritalin, concerta, adderal, etc. but nothing new in terms of an entirely new class of drug.

hope this helps,

melissa

[mrsdavidson8605]

Since I've been seeing him I've been put on Midodrine, Florinef, and most recently Mestinon, although technically Bev put me on that one. (I'm still on all of them) The Mestinon is kind of tough on the stomach, especially if you don't eat before you take it.

Man, that is discouraging for me bc i've already tried all those medications.. I wonder what else he tries and would it be worth my time and money to go all the way out there to see him...??? ugh so frustrating..

[flop]

In the UK Prof Mathias' latest medication seems to be Ivabradine (Procoralan) - he is going to suggest that my cardiologist tries me on that.

Flop

[Ernie]

Thank you Melissa and Flop.

I have low financial resources this year and I need to make a decision wether or not I can afford to go to Toledo. If there are no new medication there is no incentive for me to go because I have tried everything so far. I am on a plateau and would need to do further testing or try new meds.

[Ernie]

Flop,

I will check with my cardiologist to see if we have Ivrabradine here and keep you posted.

[Sunfish]

Man, that is discouraging for me bc i've already tried all those medications.. I wonder what else he tries and would it be worth my time and money to go all the way out there to see him...??? ugh so frustrating..

while the three meds mentioned are definitely some of the most popular, so to speak, they are FAR from the many meds that are available to try & with which Dr. Grubb (& many other docs) work with pretty extensively. obviously you have to make your own choice about travelling to see grubb (or any other doc for that matter) and i am NOT saying that grubb (or anyone else) has a magic pill or any guarantee of better treatments for you. BUT i didn't want you to think that the three meds mentioned are the only ones being used. in the years (almost 11 now) that i have been seeing grubb we've used more than ten different meds (at least) alone &/or in varying combinations.

and ernie, i definitely understand your trying to make the best decision in regard to whether travelling is worth it in relation to finances & energies. i know it's not the exact same situation, but i am continuously trying to find the balance between staying in touch/ following up with my various physicians to the degree that is helpful & necessary without using more of my energies & finances than are necessary when the reality is that some of my issues aren't going to change such that i don't need to see a doctor to be told what i already know (again!)

good luck to both of you in your decision making....

melissa

[Ernie]

Hi Melissa,

It's a hard decision for me because it's 28 hours round trip and just the fee for Dr Grubb is 900$ US.

So if I had the feeling that with the new med I could work then it would be worth going because it would pay my trip but I cannot afford right now to spend that kind of money.

[corina]

my neuro told me, that mayo docs are convinced that exercising would be of great help (november 2007). as we are all on different levels, i'm not sure if that would be of help for you.

good luck in making the right decision!

take care,

corina

[Rachel]

Dr. Grubb had me try Mestinon and Epogen, but that was all he had for me that I hadn't tried previously. Oh, and I tried some samples of Cerefolin NAC for brain fog. It actually worked, but my insurance won't cover it.

I hope you can get the information you need to make a good decision about whether or not to go to Dr. Grubb this year.

Rachel

[Megan]

I'm on Cerefolin for brain fog, also. As well as potassium (I believe it's the florinef that lowers this). Would it be possible to call the office and possibly get some information to help you decide whether or not to go?

Meg

[persephone]

Hey Ernie, have you tried EPOgen? Injections that raise bp? Really helped me.

[Ernie]

Hi Persephone,

I am taking Epogen and it is helping me a lot. My husband will loose his insurance in a few months and I am afraid that I won't be able to get it anymore. I hope to find a way to keep this med. Thanks for the suggestion.

Hi Meg,

I did not try Cerefolin because we did not have it in Canada yet but I could check. I have an appointment with my syncope specialist tomorrow.

The 2 previous years I called ahead of time to get the price of the appointment and they told me between 150$-200$ and when I was finished, after an hour with Dr. Grubb it was 900$. I had made my decision on 200$. This year I can't afford the 900$. So even if I call ahead of time to get an estimate, I can't base my decision on that because the price will change once I get there. It already happened twice.

Hi Rachel,

I tried Mestinon, it helped for my muscle weakness but I had terrible diarrhea. The medication I am looking for is one that would help me strain without loosing my K+ and fainting. I don't actually know what class of medication I need but that is my weak point right now.

Hi Corina,

I have been accepted in rehab for a month twice a week starting on May 6th. If it helps me and the heart department feels that I benefit from it they will extend the training. I don't know how I will do because when I was 'healthy' I would aggravate with exercise. So I will see how I do. I am lucky because I will have a personal trainer.