Tomorrow I see Dr. Grubb----I'm so bad at describi

[Guest Julia59]

Hello folks,

I will be seeing Dr. Grubb tomorrow, but i'm not very confident on relaying my health information to him. I always have a list, but still have trouble discussing my specific siiues with him. I think he's great---it's not him---it's me!

I have had a rough time in the past with various doctors not taking me seriously----the majority of them. Although I give advice to others regarding communication with their doctors---I still have trouble myself.

I have so many issues to be discussed

slow gut motility-costipation--chronic---actual loss of sensation

The pain issues---neck/upper back--actually my whole body---and does it relate to POTS or is it the cervical spinal stenosis/chiari? Dr. Heffez was supposed to talk with him---that is what Dr. Heffez said anyway--he stated he would be calling Dr. G regarding my on going ANS dysfunction.

My heart skipping beats when I walk---which may or may not be an issue. My endocrinologist thought it may be due to the brain stem compression.......?????

Also the hyper motility of several joints---hip---shoulder----ankles-----neck......joints popping with deep breaths---sometims even when I swallow.

Fatigue is getting worse-----extremely sluggish. My blood pressure will drop to 70/50 in the morning with no real symptoms except the extreme fatigue---especially when climbing steps. My heart rate is fixed with no significant increase when I have the drop in BP---but this is not every time.

I don't even know if some of these issues are for Dr. Grubb's area.

I just don't know how many of these things are connected to my POTS.

I can function a lot better then I used to, but seem to be having more problems added into the pot lately. It's hard to explain. I'm so used to functioning when I don't feel good---I just don't know when to slow down until I crash. The good thing is that I recover with rest---but I still continue to crash from simple things like added stress, physical exertion.

Ok---i've gone on enough................................................

Julie :0)

[calypso]

Hi Julie,

I would emphasize how POTS (or your potential POTS symptoms) are interfering with your daily life. I think most doctors have a goal of getting you as functional as possible, and if you say, for instance, "I can't climb a flight of stairs without feeling like I'm about to collapse," that comes through more clearly than "I'm tired and weak." Just be specific, and limit your questions to your top three concerns. I have noticed that the more symptoms I mention, the more the docs tend to think you're a bit of a whiner.

Good luck.

Amy

[Sue]

Hi Julie,

I just got back from my trip seeing Dr. Grubb.. Listen, print out your post and bring it with you Dr. Grubb. I basically did the same thing. I had printed out my last couple of posts, including my issues with my family. Best thing I ever have done for an appointment. I left there knowing I had asked him everything Plus more that I had intended on doing. He is a great guy, he spent alot of time with me today, I felt bad for whoever was waiting for him after me. But I had alot of questions and I figure I am entitled to his time as much as the next guy.

Good news, off the Lexapro for good. He was very apologetic for the weight gain. They still have not replaced Mary, so they are running behind call wise. But I informed them they always are. He said he would work on it.

I also have to be tested for sleep apnea?? I have seen alot of posts on this subject but never paid alot of attention. I will go back and reread them.

Good Luck tomorrow

Sue

[Guest Julia59]

Hi again,

I had my appointment today---and all went well. However, he was really busy----still had two patients in the office waiting after me, and one out in the waiting area----AT 6:00PM.

WE discussed everything on my list. My POTS symptoms are probably still related to my cervical spinal issues along with the brain stem compression. I was born with this---and it does make sense that my problems would get worse as I age----then later creating the POTS issues.

The chemicals at my ex-employer were probably the straw that broke the camels back. My cervical spinal fluid was compromised---thus not allowing the toxins to filter out of my brain in a timely manner.

I wish I would have known about my congenital stenosis a long time ago. I would have never worked some of the physical jobs I had in the past.

Could you imagine getting those heavy cart at the grocery store and struggling to get them in the door----then later working in the bakery/deli---lifting all the frozen boxes of rolls and other baked goods. I did this in my 20s---and I know I had pain then---but was always dismissed---so I just ignored it thinking I was over reacting.

I also told him about all my hyper mobile joints---but he never mentioned EDS---and I didn't push the issue. I may persue that with another doc---if I could ever find one that will take me seriously. Dr. Grubb is the only one that I can honestly say DOES take me seriously. I need a rheumatologist-----------Good God------I dread the thought.

Dr. Heffez did call Dr. Grubb----but both are so busy----they have not caught up with each other.

Dr. Grubb made a follow-up appointment for me in four months-----SEPT----this is something that we just can't let go on too long. He prescribed 100mg. Neurontin once a day, and we will increase it from there.

My PCP put me on 300mg three times a day---------------And I was afriad to take it because it seemed like too big of a dose.

I WAS RIGHT NOT TO----Dr. Grubb said it would have put me on the floor. My wellbutrin will be increased from 100mg.Sr once a day to 150mg. SR----after my body gets used to the neurontin.

In the mean time, he will do his best to get in touch with Dr. Heffez before my next appointment. All in all we had a good appointment---despite how busy he was. One woman in the next room was close to a stroke with BP of 220/110-------He admitted her.

My 24 hour holter monitor came out OK according to him. I exercised on this---so it could be recorded. I guess i'm OK there.

Thanks for all your advice---it was very helpful

Julie :0)

[danelle]

Julie, my appt was that morning at 9:30, I saw him at 12. He had just admitted a fellow MD-must have been a very bad day. Wish I would have know you were there I would have loved to have met you. I was one of those ahead of you it sounds like-sorry for putting you behind seeing him-he spent maybe an hour with me-see my recent post-actually, just posted it!!! good luck-danelle

[carlacat]

I take neurotin and yes I started out small dosage than went up with time. I am taking 2400 mgs a day and thats aminly because of my neuropathy in my feet and legs that I have but I do admit I do feel better since I've been on it.

Carlacat

[Guest Julia59]

Danelle,

My appointment was at 2;00 and I did not mind waiting at all. I brought a book with me and did talk with one of the other patients from Columbus.

Also, I don't have a long drive home-----------about two minutes actually---about a mile.

I also left with some unanswered questions. I read your post, and i'm so sorry that you had to deal with all of that. You certainly don't want to leave with more anxiety then you went with. Michigan Jan gave you some valuable advice, so I think you should be OK if you follow through with getting those tests results to a good cardiologist so you can rule out any serious problems.

Fortunately I will see him in 4 months. He may think I got more going on then POTS, but he wants to speak to my neurosurgeon---Dr. Heffez. That is the only reason I can think of as to why he wants to see my earlier then usual.

There was a cancellation, otherwise it would have been 5 months. My upper back and neck are such a mess that I find it difficult to sit up without feeling such pain and discomfort. It's really bad---so hopefully the neurontin will help. But I am more concerned with the actual cause of the pain.

And good greif-------------------------all my joints are so unstable in my upper body especially------------and no answers to that. It's really scarey!!!!!

And my bowels are virtually non-functional---not even Milk of Magnesia works. Between the bloat and the all over body pain---i sometimes feel like jumping off the bridge. Dr. Grubb said lets handle one thing at a time. First he wants me to get used to the neurontin, then increase the wellbutrin after that. Then we will work on the motility issues. He will try to get in contact with Dr. Heffez in the meantime. At least that's what I understood amoung the many interruptions.

If he doesn't get help soon, I don't know what is going to happen!!!

Julie :0)

[goldicedance]

I am curious as to how you all manage when your next appointment is 4=5 months away. It must be very difficult when you are going through POTS flareups. Can your primary care physician consult with Dr. G?

[danelle]

Julie,

I agree, I think Dr Grubb needs to slow down and get some additional help or he is going to be a pt instead of a Dr. I sure feel for him. I guess that's what happens when you are a specialist in an area where not many Dr's even have just a small amount of knowledge on the subject!! He's a great Dr but way too busy!!

You are talking about neck and shoulder pain/discomfort-boy, I have that too!! Mine is very consistent but gets really bad at times. I have never been dx with any cervical problems but have never had my neck checked out. I have had two wrecks with bad whiplash and when I turn my head I can hear popping and grinding noises but I just chalked it up to stress/POTS/fibromyalgia/etc. I know if anyone goes to massage my back or just rub it, they comment on how rigid and "knotty" it is.

I am sorry you are having so many problems, I know how depressing it can be. It seems like your whole body is just falling apart and I guess in a sense, it is. I too have the bowel problems. Sorry if I missed something, I am brain fogging today!!

I bet you were in the office when I left. Don't laugh but I kind of searched around for others that might look "POTSY" in the waiting area!LOL Not sure what I mean by that. I was too shy to ask others.

Hang in there, I will be thinking about you. Hope you get the answers you are looking for too!!

Hugs, Danelle

[Guest Julia59]

Danelle,

Again, i'm sorry that things didn't work out very well with Dr. Grubb. But it will get better---especially if you can find another cardiologist who will work with Dr. Grubb. I know that panic feeling---boy do I. To me it's the worst part of POTS and leaves me non-functional. I can handle all the rest---but it still gets depressing---especially the relentless bowel motility issues, and the stupid pain.

I'm greatful to have some of the old hellish symptoms under control---i.e.---> tremors, anxiety, panic attacks........and now I can eat mcuh better then I did when I was peaking with my POTS symptoms. Unfortunately the slow bowel motility is worse then ever. I assume my stomach empties OK because I rarely get nausious.

Oh I was the one in the waiting room reading that creepy book written by Peter O'Tool. He's an actor from Ireland/England--Around 72 years old now. He's a good actor, and was very handsome in his day. The man can't write very well---so the book is hard to follow. It was interesting though to see his perspective of that monster (Hitler) during WWII. He wrote about walking around with Gas Masks and taking shelter from the bombings in England when he was 7,8, 9 years old. I loved him in Lawrence of Arabia---and Good -Bye Mr. Chips. It was before my time, as I was just 5 or 6 when the movie came out---but I love to watch older movies, and have for many years.

Maybe you could go to the library and get Good Bye Mr. Chips---LOL. It's actully the remake of the movie, but I don't remember the actor in the original.

I'm sure that is the only place other then e-bay that you could get it---LOL Keep your chin up...things usually do get better.

Julie :0)