My Appointment With Dr. Pecker

[Yolaclover]

I had my appointment with Dr. Pecker yesterday, he is an awesome Dr., I seriously love that man, he spent a long time with me, took a long history, asked tons of questions.

In the end he does not think I have POTS. He does think i have something. He very much believes I have something, he wonders if it is the Celiac that is causing all this, so I have to go GF for 6 weeks.

I was very insistent about the severity of my night issues, the lightheadedness, the head pressure, the burning feeling that goes up my head with the neck ache (that's a new one!) The gritty sound in back of my head.

He said a sleep study would be good, but did not make an appt. for one.

He wants me to stay on the florinef.

I am so disappointed, woke up today feeling, so bad, lots of the bad things happened to me last night, at this point I don't even see why I bother, I guess I will have to drop dead for anyone to do anything to help me.

That part is so frustrating.

So, no testing at all. Nothing. I just have to be GF for 6 weeks, while I know this will help me, I know I have symptoms that don't seem like things a diet could help. But i will try.

Thanks friends, i'm broken hearted right now. Just feel like my body is a ticking time bomb. xoxox

[skiberthoud]

So sorry you are so discouraged. It's nice to know you have someone who believes something is wrong with you. Sometimes it seems like such a long, frustrating journey to find answers, or at least things that help. Going GF is a very proactive step. Embrace it and know you are definitively doing something good for yourself. Don't cheat and lets hope it helps. If not, it's one more thing to scratch off the list and keep searching and letting your voice be heard. As far as your nighttime issues, are they just before you go to bed? all night? I say be proactive and call your docs office today and get them to schedule your sleep study. That's another thing you can do that may provide you with some clues, answers and/or relief. I hope today you are able to focus on some positive things - do for yourself what you know you can do to help take care of yourself. Be kind to yourself and I hope for you a peaceful day.

[misstraci]

I hate to hear that GF is all the dr had to offer for you and sorry for all the symptoms and suffering that you are experiencing. I also feel like a ticking time bomb and the same thing you said, that it would take death before someone would actually want to help, if then. So, maybe GF will clear everything and make you feel like a new person, that would be wonderful. I really hope that it helps and that you get some relief!! Please keep your head up, I know that is so cliche' but you just have to keep pushing through and know that with the bad comes the good Hope to hear you're feeling better really soon.

[lieze]

My family doctor has gone back and forth with thinking I have POTS too and I may not be a normal case or true case but I share a lot of the same feelings so???? I would encourage you to keep posting here and asking questions.

Even though I have not sought out extensive medical research or treatment this forum has been a great sounding board and support system.

Hey I had the gritty feeling in my head neck too when I would turn my neck I would hear it-I don't hear it any more.

My symptoms kind of wax and wane so hang in there???

My case was post viral so ? I don't know - those are supposed to sometimes improve some?

Also I am malnourished and that is causing a lot of my symptoms along with these wacky allergies.

Once you get the diet turned around which believe me takes time and you may feel like banging your head against a wall but you amy not be absorbing nutrients right which will affect everything.

Something I read too is some of that is stored in your body also so it is possible to continue feeling symptomatic or bad even after your diet is clean for a period of time.

For me I get this horrible feeling that comes over me in my gut and I just feel like things are not working right-it can last a couple hours.

I often get tearful and imagine the worst but it always resolves.

So hang in there.

My weight is scary low still at 86 but I am starting to have energy now to do things,

I can stand and do things without my heart racing.

I get petrified with a weight that low I am a tiny person so that may factor in.

I am going to try to start eating more just start packing it in and see if I can't gain.

Just don't give up we can't.

It can feel hopeless but somehow we keep going and you will have times where you feel a bit better.

More than anything when I pull through this I want to try to help others.

This has been such a scary ordeal.

I didn't know where to turn.

I was too weak to try to bake my own bread or shop for organics.

In time I hope to be strong enough to travel all over and purchase my foods and help others also.

It's a scary place to be---think rainbows

My doctor told me yesterday--you have to be patient and you have go be positive.

When they weighed me I just lost it because I eat all day long and get up in the night and eat which I have to think is good.

I just need to increase my quantity I think and find more safe foods to add to my routine,

But I cried so hard my heart raced and my teeth chattered and I was hyperventilating.

It doesn't help it really doesn't.

It's how we feel but we need to focus on calm, and proactive steps we can take to try to get to a better place.

For both of us nutrition is going to be a huge part of that.

Hang in there keep posting.

[lieze]

I'm sorry for all my typos.

I just wanted to say if I could i'd reach out and take your hand pull you close and give you a great big huge hug.

I understand needing support to get through this.

Check in when you can and let us know how that diet is going and whether your symptoms are improving any with it.

I'm at about my 8 week point of corn free and it feels like just the beginning.

I read it takes about six months to find a diet that works.

Corn is really tough it's in everything.

I'm limited to milk and water to drink because everything has corn syrup or citric acid in it that you purchase already prepared.

But I am surviving-not doing as well as I like but it is a process.

[HopeSprings]

Oh no, I was keeping my fingers crossed for you. We've all been there with the disappointing Dr's visits - it can be very depressing. I don't understand why he's throwing out the POTS diagnosis though? Wasn't it confirmed through autonomic testing? What IS good is that he believes you and sounds like he wants to work with you to find answers. I think the sleep study is a great suggestion, since many of your symptoms happen at night in bed. Have you had an MRI, given the head symptoms? It makes sense to try the diet since your blood test suggests Celiac. Wouldn't it be wonderful if that was IT? Hang in there -- you've still got areas you can look into. Maybe your answer is right around the corner. ((Hugs))

[Yolaclover]

Thank you all, so, so much for your replies. Do you know they mean the world to me?

It felt good after working today as a pre-k teacher from 8-6pm in the 97 degree heat to come home, turn on the a/c and read these encouraging posts!

I had a difficult day, my body seems to be purging all of the gluten, I do see a lot of the Celiac now that I'm reading more about it. It would be great if that was IT just celiac, omg, it would be awesome.

I just know the POTS is there too, I have been confirmed for it while not taking medication by more than one doctor, I did not do the full battery of Autonomic testing, I had the TTT and my cardiologist has experience with autonomic dysfunction and is quite sure that is what I had, the TTT did not make me pass out.

I am going to keep posting here and supporting others here, I think the reason my posty symptoms weren't o bad was because I was in a/c most of the day and I had taken my florinef.

My nighttime issues happen to me before bed and if I get up at night. They are very scary for me!

Thanks again, I mean it, I'm very depressed about all of this and this place really keeps me going. love you guys!

C

[kayjay]

Just wanted to add that I went gluten free in September and it becomes easier all of the time. I still have hyper pots and other problems but I think GF has really helped. It does take a while to get the hang of. Hope it helps you. After a few months you may notice you are a lot better.