What Do I Do Now?

[Rachel]

Angela,

If you schedule an appointment with Dr. Grubb you can call every week to see if there is an opening sooner. The office doesn't mind. Since you live closer than some people, perhaps you could get in with just a days notice on a cancelling (something I can't do from GA!). It's worth a shot.

Rachel

[Sophia3]

Wow! A tilt table in HIS office! Impressive. Sounds like an ANS specialist to me.

[dizzy]

Sorry to hear what you are going through.

I would make the appt. with Dr Grubb and try to get a tilt table test done while you are waiting.

My neice was diagnosed and treated by Dr Hummel in Columbus. He recently moved to Ohio State along with several other colleages. I would try to get into Ohio State.........or get an appt at Cleveland Clinic for Dr Fouad for a tilt table test....you do not need a referral there to get an appt. unless your insurance requires it.

Wishing you luck!

[PattiL]

Angela,

If you are able to get a referral from one of your Dr.'s to see Dr. Grubb, is it possible that you go and see Beverly b/f Grubb? I know it's not the same, but Beverly is very knowledgeable. Also, If you leave REPEATED VM's for Beverly, stating your situation, there is a chance she might be able to do something for you...like at least get you in sooner to see her. Also, if you do get an appt with her soon, see if you can make the appt. on one of the days that Dr. Grubb is in. It would be in your best interest b/c then if Bev has any questions/concerns she can walk over and talk to him and he MIGHT even be able to stop in a see you. Now, I'm not sure if they'll even let you see Beverly if you're a new patient w/o seeing Grubb first, but it's worth a try. Don't give up in trying to contact her. You just might have to leave a few VM's b/f she gets back to you, just be persistent. Also, if you're having trouble with the front desk personnel, ask for Sherry. She's been there quite a long time. Some of the other girls are soooo new, they don't have a clue of what's going on. (Not just my own opinion).

Good luck, don't give up!!

Patti

[Angelika_23]

PattiL, do you have a number for Beverly?

Angela

[Rachel]

I'm pretty sure you have to see Dr. Grubb first. That's what I was told when I made an appointment.

[PattiL]

Angela,

It's the same # as Grubb, 419-383-3925. When you call ask for Beverly, every once in a while you could get lucky and she'll pick up the phone (it's happened to us twice), if not, leave a message on her VM.

Good luck.

Patti

[Angelika_23]

Okay,

I saw my PCP. I have to be fair and say he wasn't too bad. He agreed to give me a referral to Dr. Grubb and also to the New Onset Seizure and Syncope Clinic at University, but I had to agree to seek counselling.

I don't know why docs jump right to the "she's crazy" diagnosis... He was almost unwilling to admit that any emotional issues I may have stem from my frustration with my condition, not the other way around!

But anyway, I basically got what I wanted. A little more support or some good suggestions would have been good, but hey, I'll take what I can get! I guess I'll start harrassing Dr. Grubb's people soon about an appointment, maybe they'll put me on a waitlist for a cancellation or something since I'm only a couple hours away.

Angela

[Mrs. Burschman]

I think the "she's crazy" diagnosis is easier, because then they can pawn you off on a psychiatrist or counselor and not have to feel guilty about the fact that they don't know enough to know what the heck to do with you.

Amy

[desiree942]

Good job on getting the referral! But you had to agree to get counseling?!! OH BOY THAT MAKES MY BLOOD BOIL. Here's the thing -- when you read some of the interviews Dr. Grubb had given he says by the time he sees a patient they have already gone to about 11 doctors. Because autonomic dysfunction is not well understood you can't expect to get much understanding from most doctors. The first doctor I saw (my PCP) after my first episode immediately went for the "you're going to need to learn to manage stress" lecture. I switched drs. Even my cardiologist had reached the end of the line with me, all she kept doing was upping the florinef & midodrine until I told her point blank I think should I go out of network and she was relieved I think and said "yes, you need t find a doctor who has "written the book" on your problem" That's when I decided to see Grubb. After I saw him he sent a very detailed summary of his diagnosis and I must say it was SWEET to know the doctors who thought I was crazy would have to read this!

Have you had a tilt or seen a cardiologist? You really need to get all the testing done so Dr. Grubb will have something to work with, these results will really influence what he decides to treat you with... I see you are on Midodrine and Florinef, are the helping? Are you boosting the sodium to get the benefit of the florinef. I did not get much better until after I saw Dr. grubb and started cymbalta. After that I was able to get off the florinef and Midodrine completely, though my other cardiologist (the one Grubb referred me to) says keep the Midodrine in my medicine cabinet and I can use it as needed, though I haven't needed it in almost 2 years!

[Angelika_23]

Hi,

I did have a tilt, it was read as negative, even though my HR did reach 152 for a short period. Mostly it stayed at 125, but my baseline was 101 so it wasn't a 30 bpm increase. I was on all my meds and had on my compression hose for the tilt, so I don't know how reliable that test was. I have seen two cardiologists, but this is my PCP referring me, so I don't know how much info he has to share with Dr. Grubb. Hopefully he won't share that he thinks I'm nuts. I hope I don't get declined from Dr. Grubb too.

I know the Midodrine is helping, but I don't know about the Florinef. Seems about the same as before I started taking it. But I'm afraid to stop it and see... I am afraid to deviate much with any routine for fear of symptoms flaring. I did increase my water and salt intake. As I am able to get out of bed most days, I would say things are helping- but my kids and family are tired of me being sick all the time. Apparently it's not my turn to be sick anymore.

I called Dr. Grubb's office, the person there said they usually turn stuff around in a couple of days. Hopefully by the beginning of next week I will know something. She also said if I keep calling every week, there is a chance I can grab a cancellation and get in earlier. She did say I cannot see the nurse practitioner until after I've seen Dr. Grubb.

Angela

[Sophia3]

COMPRESSION HOSE FOR THE TILT TEST??????????????? ***?

That doctor should be SPANKED and you get a second ttt by SOMEBODY that knows what they are doing.

About the counseling deal....stinks but "play along, be nice". TRY NOT to cry in front of them if they provoke you for a reaction.

Come cry on the boards instead!!

Which university?? Ohio State? Well, at least it's only a couple of hours.

I am still stuck on you took meds and wore compression stockings for the tilt.

IDIOT DOCS AND TECHNICIANS!!!

[Angelika_23]

University of Cincinnati. It's a lot closer.

Yes, I didn't understand why the test was done that way. But, I was kind of glad because they didn't give me nitro...

I am going to take my time looking for a counselor, and then I have to get my insurance to okay it. So it could be a little while before it all comes together. Just like with my diagnosis.

Angela

[desiree942]

They told me at the hospital my test was inconclusive, but my cardio who ordered the test said I had orthostatic hypotension and the Tachycardia was compensatory. Dr. Grubb read it as POTS. I said to him "but I thought there was no blood pressure drop with POTS?" even though in my gut/heart I knew it was POTS from all my reading. Dr. Grubb said I definitely had POTS and it is seen with or without a BP drop.

Don't worry too much about the original tilt because he will do a very detailed exam and ask you a lot of questions and take you BP/HR in all posititons and then he'll make his own diagnosis.

[friday]

Good job on getting the referral! But you had to agree to get counseling?!! OH BOY THAT MAKES MY BLOOD BOIL.

UGh! It's unbelievable!! I've been to so many doctors over the past 7 years and I am so sick of their attitudes. When you're sick and you need understanding the most, you get treated like it's in your head, or no big deal, passed from one doctor to another, not listened to , and sometimes treated downright badly...but then it' s your problem.

Doctors are what cause me stress!!

When I do talk to my therapist a lot of the time it's about experiences I've had with doctors. I swear I would be so much better stress wise if I didn't go through all the crap I did before getting diagnosed,.,.and since then trying to get help hasn't been a picnic. I keep hearing of Dr. Grubb and how great he is. And I think if we all had doctors like that, how much better we'd feel emotionally.

[pastordari]

I'm sorry your doctors are causing such stress.

I'm glad you have gotten the referral for Dr. Grubb.

It makes all the difference in the world to see a doc who is knowledgable about POTS and ANS stuff.

I saw my AND doc yesterday and was literally in tears because she understood exactly what I was describing and was amazed that I could stand without fainting given the amount my bp dorpped upon standing. She said I was IMPRESSIVE! Understanding makes such a difference.

Hang in there for an appointment. Also DO call for cancellations. I was scheduled a month or so out and feeling terrible. I called and was moved up a bit each time until I ended up with an appointment in less than a week. It really works at times. I find at my doc's office they really want to get you in and are willing to work with you.

As for the counselor, I don't think it is an altogether bad idea. I gain so much strength from mine. However, be careful because I had one immediately diagnose me with hypochondria. I only saw him once . . . the subsequent one is much better and wiser. She recognizes that I really am sick. I want to do more and work and live my life, but fainting and running around dizzy and nauseous makes that really quite difficult.

Hang in there.

I'll pray for a cancellation to open up soon!!!

Dari

[Angelika_23]

Thank you for the nice posts!

The neuro called me today, they want me to come in tomorrow afternoon. Isn't that odd? They told me it would be three weeks out...

So, do I tell them I went around them and got the referral to Dr. Grubb, or just play dumb about it?

I have a feeling this isn't going to be a "cozy" visit. They are already upset because I won't take the Effexor anymore.

Also, I found out I only have a week of FMLA left. Need positive vibes. A week is NOT enough time to get a proper diagnosis and treatment plan. Heck, I'm looking at next June for an appt with Dr. Grubb.

Angela

[pastordari]

HAng in there. Maybe this appointment is a good thing.

i'll pray for an understanding neuro . . .

Dari

[Sophia3]

Good Luck Angelika!

I wish I could find the Dr. Grubb article somebody told me about earlier but can't find it. It mentions POTS pt being WRITTEN OFF AS ANXIETY but talks about the REALITY of the ANS PROBLEMS.

Good luck fill us in on your visit.

[Angelika_23]

Hello,

Appointment wasn't too bad! I took a friend with me so I wouldn't feel ganged up on. She liked the doctor, but not the nurse.

Anyway, they have decided I need a lumbar puncture! I am not happy about that. In fact, I am terrified. But she said after the results of the puncture come in, they will decide where to send me. She said she really wants me to get into Mayo because their lab is superior, but if they decline me a second time, she will refer me to Cleveland.

I guess they want to make sure nothing abnormal is running around in my spinal fluid. I think she was thinking viral stuff. Since meningitis seems to have started it all.

I feel better, anyway.

Thanks everyone!

Angela