Jump to content

Recommended Posts

Hi,

I have an appointment with Dr Grubb in 2 weeks and I was wondering if the ones of you who have seen him lately are satisfied with the visit. I have not seen him in 3 years so I am kind of nervous about going.

I have 30 hours round trip to do and I am paying out of pocket for this visit. So this means about 2,000$ (if I don't faint and get stuck at the ER like the last time). I appreciate very much his hard work and at the same time I want the appointment to be worth my time and money.

I would appreciate your feedback. You can email me personally if you prefer.

Thanks

Ernie

P.S.: I forgot to ask: What are the latest meds he is suggesting?

Link to post
Share on other sites

hi ernie,

i am also heading to see Dr. grubb in august, (aug. 23 is my app.), I havent been there in some time ( nearly 2 yrs) but my doc has had contact him off and on.. and Dr. grubb prescribed.. you guessed it! Mestinon...

I can sympathize with the long trip, though I dont not have to travel 30 hours round trip... it will take me 12 hours round trip to see Dr. grubb, I am traveling by bus, so this ought to be fun... 6 hours one way having to sit up, the seats dont really recline back.. this ought to be interesting!

Well ernie, I wish you a safe "uneventful" trip... and good luck at Dr. grubb's office. I hope that he can offer you some help..

let us know how it goes :unsure:

Link to post
Share on other sites

Hi,

Hi Ernie, I saw Dr Grubb in June, he was fantastic as usual. You will meet with Beverly first and then see Dr Grubb. Beverly has admitted that she does not come from a background of dealing with dysautonomia, but she is learning and WANTS to learn. She is caring and understanding, which is what so many doctors lack.

As far as meds, I too was prescribed Mestonin. Bu the only thing that it has improved was constipation. I was also prescribed Topomax for migraines, but have had to stop taking that due to very bad reactions.

Just an FYI Dr Grubb only sees patients Tues and Thurs, Beverly and the other docs cover all the other days.

Link to post
Share on other sites
Guest Julia59

Ernie,

You know i'm here---right around the corner from Dr. Grubb. I'll be right there if you need anything, and of course we can have a chat if you like.

It's up to you---as I know what it's like to travel to appointments. We just got back from Milwaukee. Not as far---I know---but i've been to NY also. Expensive is right. I always keep a low profile and leave it up to the visitors if they feel like meeting. I'm never offended if they are not able---I understand.

Safe travels, should you decide to come to Toledo.

By the way---Beverly is great---I really liked her loads.

Julie :0)

Link to post
Share on other sites

persephone-

mestinon is a drug originally designed to treat myasthenia gravis but has recently been helpful to some (including me) for BP & other autonomic issues. there have been several discussions on it so you may want to do a search. two of the "bigger" threads are:

http://dinet.ipbhost.com/index.php?showtop...792&hl=mestinon

http://dinet.ipbhost.com/index.php?showtop...401&hl=mestinon

a search for mestinon brought up four pages though so there's more where that came from!

fyi, the generic name of the drug is pyridostigmine bromide; it's not a new drug but rather just on the newer end of things for autonomic issues.

hope this helps,

:-)melissa

Link to post
Share on other sites

I have not pithy words to share with you. I'm writing mostly to say that if you go, I hope your trip is very useful. You deserve to be more stable. :) Nina

Link to post
Share on other sites

ernie -

i last saw dr. g last summer & in the years that i've seen him i've never been disappointed with the actual appointment with him. like others have said though i've definitely camped out at times. and for me, even when i've had to travel 1000miles roundtrip for the appointment, my parents live 10 minutes from MCO (now MUO) so i've always had home to fall back on (quite literally at times) before & after appointments. so...if i were you i don't know what i would do. at times i would have travelled any distance to see dr. g; at other times the cost of a trip like yours - finacially, emotionally, physiclaly, etc. - would have outweighed the benefit for me, such as at times i was more stable or had local docs who weren't ideal but were willing to work with me. it's definitely a tough decision and one that only you can make. dr. grubb is great but as we all know no one is magic (darn it!) and it is a huge trip for you. good luck with your decision...i'll understand & be behind you either way.

:-)melissa

Link to post
Share on other sites

Hi Ernie - Dr Grubb is wonderful, and you can feel good knowing he will have your best interest in mind when he sees you.

I wish you the best of luck...Have a safe trip!

Link to post
Share on other sites

Hi,

Thank you all for your wise advice.

I have an appointment on a Tuesday but I will call ahead of time to make sure that I have an appointment with HIM and not an assistant. I would be very insulted to get there and find out that I am booked with someone else.

I have tried Mestinon 3 x and it gives me severe diarrhea and GI spasms. So this one is out for me.

I would like to have meds for: migraine and/or muscle weakness, muscle paralysis, joint pain, syncope and an extra magical pill to be 20 years old and healthy!

Ernie

Link to post
Share on other sites

Hi Steph,

I wouln't mind being 20 years old again and I would greatly appreciate being healthy. If there existed that magical pill I would gladly take it. For the time being I am just joking. But if my joke turns out serious (either I turn 20 again!!!! or I get healthy) I will tell you (no joke)!!!!!!!!!!!!!

I am glad you like my sense of humour. I know I have a different way of saying things and I sometimes wonder if I come across right.

I got the approval from the local health center. They will give me 1 liter of IV the day before I leave for Toledo. Usually I am OK for 3 days without syncope with an IV. I also told my friend that if I faint in the States to tell everybody that I don't have money to pay and to bring me back in the hotel room (unless I stop breathing!) and we will wait until I can ride the one hour from the Canadian border and go to a Canadian ER.

I also want to go to the bookstore, in case there is some interesting new books, and I want to spend some time in the library. I will be extra careful and stay in my wheelchair.

Thanks for telling me that his office is on the first floor. They did not send me a letter.

I have not tried Topomax. I have not tried Migraine medication yet because I did not realise that I had migraines. I only found out a couple of weeks ago when I went to see a new neurologist. I will note it down and ask Dr Grubb about it.

Julia,

Thanks for the invitation. I don't know yet what will be my availability because I will be arriving late Monday night and I have my appointment with Dr Grubb on Tuesday. I want to go to the bookdstore and library. Maybe we could play it by ear and see how it goes. I could call you on the Tuesday after I come out from my appointment with Dr Grubb or we can meet either in the waiting room or Tuesday night after my appointment. We are leaving early Wednesday morning.

Ernie

Link to post
Share on other sites

Hi Ernie,

Just want to wish you well. I'm hoping that it will be helpful to be see by someone who understands this disease. Will the Canadian medical system follow up on what he orders for you?

BTW, if he gives you some Mestinon candy and you prefer to pass, please mail some this way, I've been begging them over here, and no one but me seems to have heard that it's being used for dysautonomia, curious to see if it would help my muscle weakness...Doctors very wary that my info comes from my "internet friends".

Wishing you an enjoyable trip!

Ariella

Link to post
Share on other sites

Ernie,

I am, finally, scheduled to see Dr. Grubb - next January. Please let me know how your appointment goes. I really hope your trip is not to strenuous. I travel from the West Coast to see him, so it'll be a big trip for me too.

Wishing you the best! (And if you find that pill to make you twenty, would you send me a 1/2? I'd like to be 30 again - :rolleyes: )

~Roselover

Link to post
Share on other sites

Hi Steph,

You come across as funny. I understand what you mean about not fainting in the bookstore again.

I will be staying at the Hilton right beside the hospital. I hope I won't get exhausted from waiting. I know noise triggers me. I think I will do like you say. Call ahead of time to check how much time and when I should show up.

Hi Ariella,

My PCP will write the script so that I can buy the medication in Canada. Otherwise I will have to buy it in the States and my insurance won't cover it.

I have some leftover Mestinon and Carnitor that I don't know what to do with.

Hi Roselover,

I am glad that you were able to get in to see Dr Grubb. The first time I took an appointment with him there was a waiting time of 8 months. I am glad I went the last time and I am pretty sure I will be happy that I am going this time also. I read all the answers and everybody is positive that it's worth my while.

I will share with you my magical pill!

Ernie

Link to post
Share on other sites

Good luck, Ernie, on your visit with Dr. Grubb.

Arielle, Here is the Mayo Clinic info source on mestinon. The Mayo Clinic is the institution that did the research for the use of Mestinon and now the lead doctors on POTS seem to be prescribing it.

Low blood pressure (hypotension)

Treatment

Article sections:

Overview

Signs and symptoms

Causes

When to seek medical advice

Screening and diagnosis

Complications

Treatment

Self-care

Low blood pressure that doesn't cause signs or symptoms rarely requires treatment. In symptomatic cases, the appropriate therapy depends on the underlying cause, and doctors usually try to address the primary health problem ? dehydration, heart failure, diabetes or hypothyroidism, for example ? rather than low blood pressure itself. When hypotension is drug-induced, treatment usually involves changing the dose of the medication or stopping it entirely.

It it's not clear what's causing hypotension or no effective treatment exists, the goal is to raise your blood pressure and reduce signs and symptoms. Depending on your age, health status and the type of hypotension you have, this may be accomplished in several ways:

Increased salt intake. Experts usually recommend limiting the amount of salt in your diet because sodium can raise blood pressure, sometimes dramatically. But for people with low blood pressure, that can be a good thing. Still, it's not quite as simple as dousing your salads with one of the new designer salts such as fleur de sel. Because excess sodium can lead to heart failure, especially in older adults, it's important to check with your doctor before upping your salt intake.

Increased water. Although nearly everyone can benefit from drinking more water, this is especially true of people with low blood pressure. Fluids increase blood volume and help prevent dehydration, both of which are important in treating hypotension.

Compression stockings. The same elastic stockings and leotards commonly used to relieve the pain, swelling, and blood stagnation of varicose veins may help reduce the pooling of blood in your legs.

Medications. Doctors traditionally have used the drug midodrine to raise standing blood pressure levels in people with orthostatic hypotension. But many of those people have high blood pressure when sitting or lying down and at night, when blood pressure typically declines. In addition to increasing standing blood pressure, midodrine also raises already-high supine pressure, leading to the possibility of strokes. Now it appears that another drug, pyridostigmine (Mestinon), can decrease standing blood pressure without affecting supine pressure.

< Previous section ^ Back to top Next section >

By Mayo Clinic staff

June 07, 2005

Link to post
Share on other sites

Ernie and Steph!

You two crack me up! :rolleyes:

I haven't been able to post at all the past couple of days and have a TON of posts to catch up on...but this one has been on my mind b/c it is 'time sensitive' as you need to make a decision about whether to make your trip or not...

This is a tough, tough, tough call to make.

I wish I knew what to say...the hardest thing is that doctors are human...and sometimes we see them on a good day and sometimes we don't. Sometime we travel very far only to be very disappointed and sometimes we travel very far to be absolutely blessed by an informative and helpful visit.

Ernie, before posting on this topic, I thought VERY hard about it. I kept your 'brevity' rules in my head in terms of formulating what I wanted to say.

I usually absolutely avoid discussion of doctors. The one time I did discuss doctors, I so upset poor Briarrose and felt awful about it...thankfully, I feel that she and I were able to work it out just find in the end.

What I want to say is that...I am maybe the only person who is posting a 'dissenting ' opinion here. And I hope that others will please be understanding of this. I am doing it b/c I care sooooo deeply for you Ernie, and b/c I so want you to find the answers and healing you deserve.

I think that Dr. Grubb is a wonderful, kind, generous spirit who truly practices medicine out of compassion and passion. However, I do think he is in way over his head. This means that I think that some days he is 'on' and some days he is not. I worry that you could go on a day that was an 'off' day for him. Perhaps this is a chance you want to take. And I completely understand that.

I have not spoken up on this topic previously, and am still almost shaking that I am doing it b/c I do not want those who have found healing through him to feel that I do not respect him. I also do not want this information to get back to him. I think he is such a good man. He just has too much on his plate.

I may be one of very few people who did not have a positive experience with him. I will not elaborate on the board. I respect Dr. Grubb too much. And I am grateful that he has helped so many of you so much. I am also not posting this out of bitterness. We all find 'matches' in different doctors.

Ernie, I would be more than willing to discuss this with you personally via email if you would like more information from me. Although, it does sound like your decision is made. I didn't post this hoping that you would change your mind. Just to 'inform' you. If you do go, it sounds like you are so well prepared and the IVs will be a big boost. They certainly do not last me 3 days! So that is great! AND you will have your wheelchair this time, which should make a BIG difference.

Whatever you decide, I wish you only the best...you are a light an inspiration to me.

Emily

P.S. Is it becoming clearer why I am an insomniac??? I think this is the kind of stuff that keeps me up nights! :D

Link to post
Share on other sites

Roselover - When in January is your Appt? I have my follow up sometime in the beginning of Jan... Cant remember the date off hand.... How funny if we have one together!

Link to post
Share on other sites

Emily, dear Emily... you are the sweetest thing on this board! Your post was well stated and I can't imagine anyone being offended by it! If I was Ernie, I would be very glad you shared your thoughts with me because I like to take all sides into consideration for my decisions. Now, tonight you'd better get some sleep! :rolleyes:

Jenn,

I sent you a personal message. It would be great if we were able to meet in Ohio!!! Dr. Grubb ought to arrange a POTSPLACE week were we all get our appointments together!! :D

~Roselover

Link to post
Share on other sites
Guest Julia59

Ernie,

I assume you will be coming to Toledo on the 1st and 2nd of August--right?

I just want to know the dates as I want to be prepared. My loop recorder is installed on Friday the 29th--this week. Today, i'm wiped out just from going to celebrate my nieces birthday. I stayed in the house the whole time, but did go out briefly to see the kids having a good time in the pool.

The heat is horrible.

I don't even know if I can make it to MUO tomorrow to have the ECG to prepare for the minor procedure on Friday. Too hot to walk from the car to the hospital, and I don't have a handicap sticker. I'm in a POTS hole.......

Julie :0)

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...