Waaaah!

[Dizzy Dame]

It seems that ever since I've gotten sick, every doctor I see examines me, looks at my previous test results, then referrs me out to another "specialist". After over a year of agressively searching for an underlying cause for my POTS, I finally ended up at Hopkins with a doctor I thought would have an answer...

I just got back from my follow-up at Hopkins where my neurologist suddenly decided that even though my EMG was positive, and my ACH receptor antibodies were positive, that I don't have MG (because I have no symptoms for the disease) and that whatever's going on with me is POTS related...then he referred me to a POTS doctor in the metro area for ANOTHER TTT (this will be my 4th).

I'm beginning to feel like I'm going to lose my mind! Everyone I see takes one look at my file and backs away slowly. No one wants to touch my case, and the people who do unfortunately don't know where to begin with my treatment. I have a great PCP right now who's working really hard to get to the bottom of things, but she can only do so much without expert advice...and all the experts keep referring me to other experts!

Thanks for letting me vent. I just don't know what to do anymore. I've hit brick walls the whole way since getting sick and I don't know if I have the strength to do it anymore. I know it's wrong, but sometimes I wonder if I should just accept the fact that I'm going to be sick and I'll never know the real cause of my symptoms and that's that.

[goldicedance]

Who is the Pots doctor? Why in the world do you need another TTT? You've had that done at Vanderbilt. I think that they are just spinning wheels and treading water at best. Are you trying mestinon?

[Tammy]

I don't know why you'd need another TTT! If it's shown a positive result, you shouldn't have to keep going through these. Also, according to my cardiologist, TTT are 15% inaccurate so basing your treatment on it is going to have about the same accuracy rate! I go through phases when I give up or I guess I look at it as just "needing a break from drs and testing" and until I feel ready to deal with all that again, I don't. Only problem is I haven't made any progress in how I've felt either, so it's a catch 22!

Best of luck to you with it all and hopefully you'll find a specialist who can really help you.

- Tammy

[Ernie]

Hi,

I also don't see why you have to have another TTT. It will show the same thing again and again. It's a waste of your time and money and it might make you sick for days.

[Guest dionna]

i am sorry they keep getting your hopes up like that. all of my docs are in DC but they are military doctors. i wish you could see them... they help me out as much as they can. if they ever refer me out in town up there and i find a good doctor i will definately let you know. good luck to you, girl.

dionna

[Guest Anne L]

I know what you mean. My PCP and the cardiologist, after doing every cardiac test available, got together and decided that the bad news was they didn't know what was going on -- and the good news was that I was moving soon.

I didn't move. My very young PMD thought I hated him because he didn't have an answer. (He couldn't believe I had referred friends to him.) When I took him printouts about dysautonomia, he read them and said "That's It". A three inch medical file (over fifteeen years) down to one word. Hooray. And a new respect for doctors who care too much that they don't know everything.

[MNsue]

You sound a lot like me. I am working with an immunologist, and am getting better. I am now taking Cell Cept (also a drug used on MG in trials) It took about 6 weeks to kick in, but the numbness and weakness on my left side is much better, and I am taking less Midodrine. I am not perfect, but I am better.

Good Luck.

Rhonda

[Poohbear]

My understanding from most of the researchers in the field of Dysautonomia is that in MOST cases they will not find the root cause.

I think at some point you have to accept that, try the various therapies that are out there and then re-focus your life on living the best you can instead of running yourself ragged with Dr's.

Most of us have Dr's who are afraid of our cases but it's also true that the symptom controls available are not very effective for many of us.

Just my opinion but I think another TTT is a waste of time and money.

[DSM3KIDZ]

I agree with everyone else on not going throught with another TTT that's just not neccecary. I also know how you feel on not having the energy. I really need a new POTS specialist but am to tired and sick to search for a referral and do the whole medical records thing. I wish we could hire someone to do all of this for us. Or we could be kids again and our parents could search for our best treatments. We have so much limited energy it's sad it has to be wasted on stupid doctors.

I wish you the best on your search.........I woulnd't give up just maybe take a break and the doctors will still be there when your ready.

I keep thinking once they find the right combo of meds I will be functioning better once again but it's the challenge of finding a doctor that will go through the drug trials with you.

I wish what works for one works for all with this illness than we could all be success stories.

Dayna

[Dizzy Dame]

Thanks guys for the support!

I know I don't need another TTT, so I'm not going to do it. I've already had an extensive autonomic work-up at Vanderbilt so any other tests they could do really wouldn't be helpful. I know I have POTS and I know exactly what my body does whenever I stand.

[minimay]

I don't really understand.... I know that there can be many different root causes to POTS. But I always thought that doctors didn't quite yet know what they were. I read that they weren't sure what actually causes POTs..just had a rough guess at some things they think could be the root causes. As for the TTT I wouldn't do another one either.... You already know you have POTS. I just started this group Dizzy...but what exactly is your typical day like.?..can U do anything during the day? I think there are many different causes for POTS and each one of us has different symptoms...and we just have to take each symptom and deal with it according to our illness......

[Lulu]

chiming in late, here...only thing i can add here is more of the same! you are not alone!! & i am so sorry you too are being given the run-around!! what a hassle! why can't we just get caring, needed help? .....seems so often there's too little of that to go around these days ?? (shakes head)

i agree, don't subject yourself to more torture table test (that's what i call those darn TTT's) and please know i wish you all the best as you continue your journey!!! and i hope you feel better and get some answers soon!

best,

lulu

[Dizzy Dame]

Thanks Lulu, for your support, and it's never too late to chime in

Aussies Girl,

I think maybe for some the cause of their POTS can't be found, but for most POTS is caused by a virus, or an accident, or some have a family history. I never had a virus, never had an accident, and my illness is more than "Just POTS" I have many other symptoms of sensory and motor nerve damage that can't be accounted for. I feel that since I was very healthy and active all my life (I was an athlete before getting sick) and since there's no family history of any autonomic dysfunction, that I have something more than "just POTS" going on.

As for my typical day, I'm pretty sick. Most of the time I'm on the couch. On good days I can leave the house for a maximum of about 4 hours in my wheelchair. I go through periods of ups and downs, right now I"m in a down period. Last spring I was able to attend school part-time, but this semester I'm too sick to do much of anything.

I do feel that everyone should try to find a "root cause" for their POTS. Contrary to what some of my physicians have said, I don't believe that a body can just deteriorate on its own for no reason. There's always a reason, it just may be very hard to find.

--

Thank you all again for your support! This forum has given me the strength to fight for answers, and I'm sure will continue to give me strength.

[Maxine]

Dizzy Dame,

I'm sorry that Johns Hopkins is not helping you. I know what it feels like to be passed around. If they can't figure it out, they want to pass you on to someone else, or they just dismiss you altogether.

The TTT is not always conclusive, and other testing should be done along with it. If you feel strongly that you have other health issues in addition to your POTS, then it's worth searching for, but it is exausting also.

I also am one of those who have multiple things going on, and still going to other neurologists, neurosurgeons to find out what else is going on.

While you may not find out what is causing your POTS---you may find out what else is causing the other symptoms.

The only ANS tests I did have was the TTT----and a catecholamine blood test. I had to request the blood test, I was misdiagnosed with hyperadrengic POTS. My catecholamines were normal---except for high dopamine levels---which could help expalin my other CNS symtoms.

Thankfully I requested the blood test, or I would have taken the clonodine. That could have been dangerous----considering my BPs were running 70/something on many occasions---. I'm already on a beta blocker to control the tachycardia.

I feel your frustration. It must have felt terrible to go to one of the big ones---Johns Hopkins---and then told they can't help you. Cleveland Clinic did that to me.

Keep hanging in there----------

Maxine

[ariella]

about myasthenia...

I don't wish it on anyone, but, the positive achr and emg (was it an sfemg) should confirm a diagnosis, even without symptoms. You may want to do a google search about achr antibodies, but to the best of my knowledge, unless you were bitten by a snake (yes, there is some lit. about that!), a positive achr should be diagnostic in and of itself. There are a couple of possibilities that would cause a false positive, but highly unlikely.

here's one link:

http://128.252.151.78/neuromuscular/mtime/mgdx.html#AChR

I was (mis)diagnosed with MG for about a year, so I've done lots of research (my achr was negative). My doctors also wanted to blame everything on POTS, but my POTS doc wouldn't hear of it. Is it possible that the overlap is going in the other direction---symptoms that you may be chalking off to POTS may be MG?

In my experience, MG is something that should be dealt with by a neuromuscular specialist, not a regular neuro. They are often clueless. Braintalk forums should be back on the internet the first week in September. You may be able to get some useful direction from the MG forum there.

Sorry you are going through a runaround again. You must be very exhausted from it. I find the runaround more draining than the disease sometimes.

All the best,

ariella

[MightyMouse]

I totally empathize with you! I can't even get my gp to treat me for a simple ear infection--she's trying to pawn me off on another ENT. I feel like a ping pong ball. I'm sure you can relate.

I don't envy you having to get another TTT--what a waste of $$, time and you're limited energies to reinvent the wheel. Sorry that you're going through all this when you're already not feeling well.

We can have our pity party together--what kind of cake shall I order? Nina

[Sunfish]

lauren -

so sorry for all of the run around you're getting; i can definitely empathize.

without going into detail, i will say that i had some VERY rough experiences medically at Hopkins over the years. there are some absolutely great docs (& other people) there but i found the hospital as an institution to be rough to navigate. just because a place is the "best" doesn't mean that they have all the answers. i also think that some of the "best" docs are so specifically focused that when someone doesn't fit in their "box" of sorts they don't know what to do. just my ramblings on the matter...

i would be curious to know who you were referred to though. as you may recall i lived in maryland for 9 years (until about a year ago) so have lots of experience with docs in the baltimore metro area.

i do agree that - unless someone comes up with a REALLY good rationale - another TTT seems rather fruitless at this point in time.

and i suppose i take a middle ground regarding finding a cause. i don't think that it's possible for everyone to find out the "why" with the current knowledge. i do think there is a "why" for all of us but i think there's a balance between trying to find out what it is and moving forward; obviously moving forward can be helped by a "why" but an endless search can also keep one from moving forward. we're all different i suppose & i think you know i'm one that has (& continues to) search for answers & solutions, but i guess i do feel that at least for me there has to be some balance....

hang in there...i know it's easier said than done.

melissa

[Dizzy Dame]

Thanks Nina and Melissa,

and Nina, I'll take a vanilla cake w/ midodrine sprinkles

I certainly understand the middle ground, Melissa. I'm just not quite ready to wind the fight down. We still haven't fully explored many options like the mitochondrial angle, and the myriad infectious diseases that could cause symptoms like I have. As someone who lived in the amazon jungle for a year in an open-air thatch hut, eating fruit right off the trees, I want to make sure I'm not carrying some weird jungle bug around in my blood.

I think if I get the mito tests and all the possible infectious diseases ruled out, then I'll take a break and try to focus on healing without answers...but I want to make sure that I've exhausted all my options before I "retire" so to speak.

Thanks again guys for all the support and good wishes!