New kid on the block

[wareagle]

I haven't "officially" been diagnosed..yet. I've been sick for 14 mths now. Like most of you I've seen so many doctors and have been misdiagnosed so many times I'm beginning to lose my faith in the med. profession. At first it was a B12 deficiency..when treatment didn't help I was dx with a sinus infection..which apparently triggered "anxiety attacks". Then it was mono..EBV..but after 6 mths of no improvement I finally landed at the Mayo Clinic in Jacksonville. Everything was "normal" except my autonomic reflex screen..so I had to return and have an extended tilt and to see the "specialist". It was quite disapointing when the "specialist" at Mayo indicated that although my tilt test was "abnormal" I fell into a "gray" area and most likely had an a-typical anxiety disorder. I work in the medical field as a Speech Pathologist and know a bit about nero. issues..also have worked with many physicians. I've never been so frusterated and angry in my life. Don't know if it's b/c I'm only 27 or if it's b/c I'm a female...I feel he completely blew me off.

I have found a doctor in my area who is a specialist..he actually has this disorder. I was lucky to get a second opinion. I had another tilt test recently along with an ECHO..and will see him in a couple of weeks for the final dx. I haven't had any medication or tx for any of this yet..just hope something will work.

Most days I can hardly get out of bed..this had been a nightmare!!! I had just gotten out of school and had been working only a year when this hit..I feel as though my life has been taken from me before I could even start it. I now live with my mother (Thank God for Her) who takes care of me in every way. The future is so uncertain..it's hard to be hopeful. I don't know what I'm going to do..I haven't worked in over a year..can't drive..I live in my bed. It's funny how many things we take for granted. If I could just take a shower..or go the store...heck, if I could just walk outside for 10 min. I'd cry tears of joy. I'm scared that I've lost the person I used to be...I'm in morning for my old life.

Every day I have to remind myself that things could be worse..they could always be worse. Have to just take it one day at a time and have faith that eventually things will get better..they have to. Sorry to ramble..it's hard to focus for long..thanks to all for listening. Any advice would be appriciated!

Have a great day and WAR EAGLE!!!

[opus88]

Hey, Wareagle!

You must be in AL . . . ? I moved to AL 9 years ago - I'll never go back to the Midwest!

Don't worry about rambling on this site - we all get passionate about our experiences and have to share it, because others don't understand. So go for it. We'll be here to listen.

Most doctors will only go so far with their patients, then after their few things don't work, they assume you have a mental problem and begin to blow you off. Sorry, but that's the story more often than not. I don't even go to them anymore - everything I do has been done thru nutritional changes, supplements, etc., plus just plain stubbornness. I feel my mission is to prove the medical world wrong, and actually live a decent life in spite of them. Most days I'm ok enough to appear normal to the outside world, although I have my awful days as well. But I know I'd be MUCH worse off had I not incorporated all the changes and become vigilant about everything I eat, drink and do.

I have struggled my whole life with this (turned 43 yesterday) but never knew what it was until about 3 years ago. After 20+ medical practitioners in my adult life and I don't know how many as a child - and getting nowhere with them - I actually stumbled upon the whole dysautonomia thing on my own. So all my research and learning and trial-and-error has been recent. I'd say I've done darned well on my own for such a short time.

I don't know where you live, but there is a dr. in Pensacola, FL who has similar health trouble himself and sees a limited number of patients. It's on this site somewhere. I've not been there, but you might want to try him.

The biggest thing I can tell you is to become stubborn. There are days when I just want to wallow in my own self-pity, but most days I have a single-mindedness to getting thru the day. I have lost 2 successful careers to this. A couple of times I was sure I would end up on disability. But today I have a full-time office job with leadership roles, plus I teach from home 1 evening a week and play the piano for a wonderful community chorus once a week for 6 months of the year plus performances. No, it's not always easy, and I honestly don't know how I managed to push myself through some months-long bouts of all the horrible symptoms hitting at once. But I don't feel any better being less busy, so I'm gonna go ahead and live my life. I won't give in.

Hang in there - learn all you can and start making changes. It will get better.

[Ernie]

Hi,

Welcome to this Forum.

It takes a while (years) to get used to living with a chronic disorder. We learn tricks to compensate and to go about doing our ordinary chores. We also have to deal with losing our previous life. Everything takes time but we make it through. We have good days and bad days and we help each other out. We share our experience and knowledge and "wisdom".

It also takes time to get the proper medication. Sometimes we have to change doctors to find a competent and understanding one.

Good luck

Ernie

[tinksinflight]

I welcome you also...

Just to say that I hope things get better, And that I agree...I also have had no luck with medication and can't imagine how I would feel if I had.

I have cahnged my entire life around to meet the demands of my body...I start my day with a liter of water..this I drink before 10 am...then start on my second liter...I stay far away from sugar and most wheat products. I consume alot of salt, celtic sea salt to be exact , and I get alot of rest. I don't feel good...yet I'm not feeling like I did when this all started 2 years ago..I thought that I was dying..I never over extend myself...I have learned my limits and work with them..

Have faith in your self and try to keep a positive attitude...Things will hopefully improve..And something else that I found to be helpful... No matter how bad I feel when I first get up in the morning, I force myself to stay on my feet and keep walking around..Helps to get blood circulating...then I proceed with caution through out the day..I do pass out sometimes so I have to watch for the signs..yet...I still feel better if I am up moving about when I can..And I refuse to allow this to completely control me.. By the end of my day I have had 3 liters of water...Usually eat very lite meals...with alot of salt..And never drink anything with caffine...That just makes the tachycardia worse..

Good luck to you, and keep in mind to that no matter what you try ...it may take some time to see the results...

[nantynannie]

Hi War Eagle,

I see that you have already gotten a lot of good advice, so I will keep it short! I was wondering...what was abnormal on the tilt? I am just curious about this because it is distressing that though you had an abnormal test, they rx'd anxiety. That is very frustrating!

Anyway, the only thing I can add is that some people (not all) seem to improve over time. The others learn to cope better over time, so either way, I am hoping that time will help you.

Ann

[Michelle Sawicki]

Hello War Eagle,

Welcome to the forum! I'm so very sorry to hear about all you're going through. Many of us on this forum have had similar experiences and also have wondered about the future. It is normal to go through a mourning period. However, there is always hope. I was once bedridden and now I live a full and active life. There are medication options out there for us. Hopefully your doctor will be able to find one that works for you. Hang in there...I know it's tough but we are here for you and will encourage you every step of the way.

Michelle

[MightyMouse]

Ditto to what Michelle said. The diagnostic process, and the road to a diagnosis can be quite frustrating. I've had symtpoms since very early childhood and it took me to age 32 to get a diagnosis. Sadly, 14 mos to a possible diagnosis is pretty darned FAST.

Hope is a pretty powerful thing--hang on to every ounce of it that you can muster! On the toughest days, I swear it's my attitude that's kept me from coming unglued... well, that and my friends, including each and every one that is here and has listened, shared, and cheered me on.

Welcome to our tiny corner of the internet! Nina

[wareagle]

Thanks all for the support! It is comforting to know that there is "life" after this dx. Just hoping to get to the point where this is manageable so that I can get on with things.

In regard to the Mayo Clinic in Jacksonville. I'm not sure why the "specialist" didn't have any suggestions and classified it as an a-typical anxiety prob. I only had a 10 min tilt. My bp stayed pretty level, but hr rose from 80 to little over 120. They said it was abnormal..but not enough to qualify as POTS?

I am seeing another doc in P-cola who also has the disorder and fortunatly sees it another way. I've sense had further testing with a longer tilt..only able to last 25 min (it was longer than I thought I would). During the test my bp was all over the place and hr went from 70 to over 120 and stayed there. I'll see my doc soon to go over the results and hopefully will have some idea of possible tx plan.

I've never passed out, just feel like I will. It's difficult to sit or stand b/c I feel as though I'm being pulled down to the ground. I have basically ALL the symptoms of POTS..and currently even my "good" days aren't so good!

I'm am very greatful for this site and all of you! It's nice to know I'm not alone!

Have a great day..and WAR EAGLE!

P.S. Yes..I'm in AL.. and went to Auburn. For those of you up north who may not know what that means..war eagle is our battle cry!!

[JLB]

This is a really encouraging thread. I think I'm going through some mourning right now, as well, because it's all suddenly gotten so much worse than it used to be - my life is being impacted.

I love your attitudes. Gives me hope.