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Answer from Mayo


Mrs. Glass
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I ventured out today, which was a big mistake, but I am going stir crazy. While I was in the check out line at the grocery store my cell phone rang, and it was the Mayo clinic. Well they accepted me, but only to put me on their waiting list. The lady that I talked to didnt know how long the list was, or how long that I would have to wait either. It was very disappointing. I was already so wiped out just from riding around in a motorized wheelchair to buy a few groceries, and I didnt think that I would be able to get into the car, but to have this news upon it. Needless to say when I got into the car I just started crying uncontrollably. Im so tired of all of this. I just want to give up. I know that nothing can probably be done but this is just crazy. I guess I am venting because I just dont think that I can take much more. All I do is sit or lie around. This is not living it is just being here wasting space.

Well I guess that I have vented enough. So I guess that I will go for now. It has been a month since I faxed off the papers to Vanderbilt and I still have not heard anything as of yet. It will probably be the same thing as Mayo. Dont know what to do any more. I cant see very well right now so I will go. Vanessa :rolleyes:

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Hi Vanessa, I really think we spend half of our lives waiting. I know how disappointed you are, but atleast you know you have been accepted. Each day that passes you are that much closer to getting in. Do you know how they contact you with the appointment?? I bet someone here on the board can give you some useful information. I wish I could, but I have never been to either place. Keep your head up. :)

Jacquie

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Vanessa,

I read your post and feel so bad for you. I understand your disappointment. I have been to Mayo twice and they didn't have any more to offer than my internist. I had the TTT and other tests that I can't have locally but was so disappointed they could not help me. I think we all just wish we would go into a new clinic and someone would have the answers for us but they don't. I also tried another big clinc about 4 hours from home this summer, there was a physician on the list there who specialized in POTS. Same thing TTT, no new advice. He was very nice and compassionate. But, everything he said I already knew.

I know how hard it is to fight everyday and am also so tired of it. It is helping to see a counselor. We all struggle, even people who are healthy want to give up sometimes. It's normal.

Don't be so hard on yourself. It's OK to lay around. I have finally accepted that.

My son and I were talking the other night, he is 24, he said "mom, you will never be a new car again", if something breaks down to the point that you cannot move you will need to go to the doctor. As long as you can get from point A to point B keep going. You can't be thinking about the brakes are bad, the tranny is about to go, the tires are bald etc.

I tend to live inside myself and dwell on my symptoms. It's hard not to when you feel so bad all the time. But,

it isn't helping so I'm slowly working on changing.

It was a really positive thing that you went out today. Focus on the fact that you succeeded.

I'm going to try to start driving again, I haven't for a couple years. Even writing it gives me anxiety. GOOD GRIEF!!!!

We're all here for you.

Hugs

Dawn

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Hi Jacquie

They call you. So I just keep waiting. Vanessa

Hi Vanessa, I really think we spend half of our lives waiting. I know how disappointed you are, but atleast you know you have been accepted. Each day that passes you are that much closer to getting in. Do you know how they contact you with the appointment?? I bet someone here on the board can give you some useful information. I wish I could, but I have never been to either place. Keep your head up. :)

Jacquie

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Hi Dawn

Thanks for the pep talk. I know that I have to concentrate on the things that I can do, and not what I cant. I even told my daughter that I needed to find something to do every day just to get my mind off of my health even just for a little while. My biggest problem is I dont have a proper diagnosis yet. My Cardiologist says it could possible be one thing causing it, and then my Neurologist says no that it could be this or it is not that . They have got me going in circles. I have decided that I am not going back to the Neurologist any more. He has not helped me at all. I am just wasting my money.

Your Son sounds very wise, and I will have to remember what he told you, and apply it to my life. I also live inside myself and dwell way too much. but what else is there to do? My eyes dont work right and now my hands dont want to work right. I try to do as much in the house as possible, but that is either nothing or very little. If I do get up and say do the dishes, I pay for it for the next week. If I stand up for very long my heart starts feeling heavy, so I have to lay back down.

I hope you can get back to work. You had to stop working when I started having all of the problems. october of 2004. Before then I was healthy as a horse.

Well I guess I had better go. Vanessa

Vanessa,

I read your post and feel so bad for you. I understand your disappointment. I have been to Mayo twice and they didn't have any more to offer than my internist. I had the TTT and other tests that I can't have locally but was so disappointed they could not help me. I think we all just wish we would go into a new clinic and someone would have the answers for us but they don't. I also tried another big clinc about 4 hours from home this summer, there was a physician on the list there who specialized in POTS. Same thing TTT, no new advice. He was very nice and compassionate. But, everything he said I already knew.

I know how hard it is to fight everyday and am also so tired of it. It is helping to see a counselor. We all struggle, even people who are healthy want to give up sometimes. It's normal.

Don't be so hard on yourself. It's OK to lay around. I have finally accepted that.

My son and I were talking the other night, he is 24, he said "mom, you will never be a new car again", if something breaks down to the point that you cannot move you will need to go to the doctor. As long as you can get from point A to point B keep going. You can't be thinking about the brakes are bad, the tranny is about to go, the tires are bald etc.

I tend to live inside myself and dwell on my symptoms. It's hard not to when you feel so bad all the time. But,

it isn't helping so I'm slowly working on changing.

It was a really positive thing that you went out today. Focus on the fact that you succeeded.

I'm going to try to start driving again, I haven't for a couple years. Even writing it gives me anxiety. GOOD GRIEF!!!!

We're all here for you.

Hugs

Dawn

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Hi Vanessa

I am pleased you have been accepted, even if there is a wait.

I know how difficult it is to wait - I had to wait several months to see my Dr (initially I was refused because they didn't think I had autonomic problems).

Maybe you could call them and ask to be put on the cancellation list (if someone else cancels you may get ahead).

Take care,

Ben

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Vanessa,

My son had a very encouraging visit with Dr. Low. I think how helpful you find him to be might depend on how much information you already have. We had very little, other than one TTT and a POTS diagnosis, and the information he was able to provide from his testing was very helpful.

Seeing all your other problems, I have one suggestion for you. If you want to see consultants in other departments, let them know when you first meet with Dr. Low's and his resident on your first day there, or even better yet might be when they contact you to set up your appointment. For example, if you want to see an orthopedic consult, they'll schedule that into your visit. Make the most of your time there.

Mayo is a well organized place and everyone is cheerful and efficient. I call it the Disneyworld of medicine, and as a nurse myself, I can be pretty critical of medical services. If you need a wheel chair to get around, you can rent one from the service desk at the subway (underground walkway) entrance to the clinic.

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Iunderstand your frustration. I have been there. I have waited for months to see a doc for POTS and when the time finally comes, nothing new to add, just try to treat the symptoms. Please don't give up!! Maybe there is a dr locally who will call and try to get you in sooner. Mayo has a "dr referral line" dedicated for dr referrals only. Hopefully that will work and then you can see a dr there and they can put you on a different treatment plan that will make you feel better. I am sending you *HUGS* and wishing you better health!!!

take care,

bamagirl

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Vanessa,

We are all here for you! I hope things are getting better for you. I think Dawn really hit home aboutt what here son told here. I had to quit my job also, ( after going to Mayo, Cleveland, U of Iowa, and Iowa Heart for test trying to find a better treatment, but really didn't get any where. I get so mad, and depressed because I thought I would feel better when I slowed up, but thing are slowing just getting worse, I am now to the point I have 1-2 good hours a day, the rest of the time I am in bed. I get so sick, of it, and also the TV ( same shows.....) I get so down and keep thinking about everything I never focus on getting better, and the future. We can only hope that they will find the right drugs or treatments for each of us, and live one day at a time, and the biggest thing is to be here at DINET for each other. It nice to have friends here that know what we are going though!

I hope things start going better for you!

Amy

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Vanessa,

I so understand how you feel with the waiting. I too am waiting from the call from Mayo as to when I came come in. Before that it was waiting to see the cardiogist 3 times, waiting to see the neurologist, then waiting for hospital tests, then waiting to see the other neurologist, then waiting to see the cardiologist again...only for them to say that my condition is beyond their level of expertise. That there was a total of 6 months.

I cried after each appt., I cried after each phone call. It is hard to be so sick and have to wait.

And the contradictions between doctors, it leaves one depressed. I have had several good cries.

Then I remind myself that even if I cry til the end of time, I will still have what I have.

On the bright side, you are on your way to further, better diagnosis, and better treatment!

Take Care! Renee

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