At A Loss Of Where To Turn For Help

[dizzygirl]

hey folks

Yesterday I saw my pcp and explained my new/worsening of symptoms to him.. and while he listened to what i said that was going on that was about it.. the doc does not know what to make of my symptoms other then they certainly are bizarre'..

There is something going on with me other then POTS.. and wahtever this is .. is progressing... my pcp admitts (like other doctors ive seen) that they are missing something crucial.. that will help put the puzzle pieces together.. but nobody know what that is.. and aside from doing basic testing.. nobody seems to want to take a real stab at what is going on...

I asked about going to the MAYO clinic.. he said to talk to the specilist in may about it. I was Like OK.

Nothing else was addressed... I come back for a follow up in 6 months. I was like Ok I just told you that im having increased Nuero symptoms.. and you say come back in 6 months. that is waht got my last pcp fired! He had me in his office with my BP sky high.. I was still in freaky faint mode.. with seizure like stuff going on right before his very eyes.. and he sent me home and told me to call him in a week if i wasnt feeling better... after i had had a full night of adrenaline surges and paralysing.. yeah ok.

So today is a new right? maybe i can make some head way somewher else..WRONG!!! I was supose to go to NY to an insittuion there for Eval.. however.. I ve learned that inorder to go there i need nearly 4 grand up front.. I was like yeah that is half og my yearly income. So that is out.

Low and behold today.. ya know that specialist i mentioned a few paragraphs ago?? well this particular docs secretatry called me to get more information from me.. for my app. coming up in a few weeks...Which mind you I made this appointment back in january of this year I told them up front what i need from this appointment and who i had seen in the past for current and past treatment...

well i got a call today from this lady who was full of herself. And at first she said they where going to put my appointment on hold until i sent my med records for review.. before they decide if they will see me or not.. then as i gave her more detail on what i was experiencing and that i have reached road block after road block.. she informed me that my appointment is now totally cancelled.. her exscuse being this doctor is not a seizure doc.

I was like WHAT! I only told her 4-5 times that I DO NOT have a confirmed diagnois of any kind of seizure disorder.. that my eeg's have all come back abnormal.... but thye can not say for sure that i do or dont have seizures.. but i dont have epileptic stuff going on..

and then she went on to tell me that im allready being treated for my pots.. while i aid that is technically true.. that my current treated docs are at a loss of what to do for me. and that i really need to be seen by a neurologist.

WELL this doc i was suppose to see in a few weeks is a neuro. what the heck... since when is it the responability of a secretary to make such an inportatnt decision of weather or not a patient is going to be seen and eval?

Then she went on to say that my insruance will not pay for out of state services.. that is a load of horse hooey.. b/c my insurance has paid for many out of state doctors infull i might add...

she just kept telling me that you case is too complicated.. and that this office is not where you need to be.. so i asked well then where is the correct office..that i need to at.. and if your office is not going to help then id appreciate a referral to somebody who can help me.

Im just at my witts end dealing with all of this.. there is something wrong.. something si causing my pots symptoms along to go absloutly nuts.. and i cant get anybody to i mean NOBODY to take any action... i recently tried talking with a nurse who was so rude to me it was unreal.. nurses that rude should not be dealing with patients at all they should be kicked to the curb i think.. well this particular nurse so would not listen me at all.. i was trying to talk to her about chest pain i was having.. and i just got nowhere.. and ended the conversation b/c this nurse was so arguementative ,condasending, and arrogant... that i coudlnt stand talking to her any longer.. it was a waste of my time and energy...

I honestly do not know ehre to turn for help at this point.. i feel right now that i have tried every avenue that i have available to me at the presnt moment and ive been shot down again and again.. and getting no where fast.. meanwhile my health satus and my fucntioning level seems to be going down the crapper faster then i can keep up with it...

I just cried all morning today... i was so upset.. it try not to get my hopes up... but ya know when you live with this day in and day out.. its kind of hard not tohang on to something hopeful.

I really feel like hope has fown the coop here.. and i dont know here to turn to next...there are so many issues..

2 docs have told me know that im having swelling on my brain.. 1 doc told me about an abnomral brain mri..4-5eeg's abnormal.. no answers.. labs abnormal no ansers... then dropped me as a patient almost immediately.. my symptoms are worsening and new ones are coming about.. yet.. nobody will do anything about it..

so what do i do now?

anybody here got any suggestions?

[nadine]

Linda----

I am sorry you are having such a hard time getting the care you need. I know you have been feeling worse and not being able to get answers and care is more than one can deal with when feeling so poorly.

I am not sure if you are familiar with the show "HOUSE," but my husband is always telling me--- " I want that doctor, maybe than we can get some answers." We laugh, as we know it is just a show, but many friends have said the same thing to me. They want to put me on Medical Mysteries or to be a case on HOUSE. I have been telling docs for 2 yrs. there is something underlying going on, things get worse, not better and I keep seeking answers. I won't give up, but it is frustrating to find a physician who wants to try and tackle the entire picture and not just a piece of it.

In your case it seems if you have abnormal MRI's and labs- if I understood you correctly, than your PCP should be following that. Do you have a regular neuro that you have been seeing as well as your PCP? I may have lost some of the info here, sorry.

I don't have any real answers, but I do relate in some way. I make sure I have reg. apts. almost monthly between the two docs I am currently seeing to make sure that the symptoms are evaluated for changes, even if they don't have answers. I also brain storm treatment options with them and the other specialists I see. The problem with that is getting them all to communicate. Doesn't always happen.

Keep after that PCP ---- take care

[persephone]

Linda!!! this all *****! Do NOT give up! Eventually you will find a lovely specialist who listens. It took me 12 years but eventually I foud one 500 miles away who said you are a person, not an ailment. I had all but given up- was ready for everything to just END- but then she appeared, like a little godsend! I hope you have a godsend too, love. I'm thinking of you. Mail me anytime (I've not been on myspace much- it attracts all sorts of junk and viruses to my computer. Have you tried facebook.com? It is much easier to use, and really huge now! Give it a go!)

Love you hen,

[Tammy]

Yup, I was thinking of the "HOUSE" show also as I was reading your post. If there was just a doctor out there like him that could help us, we'd all have a happy ending to our sufferings of this illness! Only problem, my husband says that with as sensative as I am physically to any testing, etc. and it seems that House has a kill or cure method in his process of diagnosis, my husband would be afraid of the possible "kill" factor

Wish I had some advice, but my physicians are also baffled by a lot of things my body goes through and have been told to find ways to cope with them which is such a joke. How can you cope with feeling like your not going to see the light of another day! And then you manage to fall asleep and a few hours later are shocked to wake up and relive this nightmare once again.

- Tammy

[masumeh]

So sorry you're hitting brick walls these days. It's very frustrating to suffer AND not have the proper support around you. No magic wand here....but I really hope you find some peace somehow. Wish I knew a good, dedicated, compassionate neurologist...actually I do know a couple neurologists. One is a friend of a person close to our family...the other is my uncle's step-daughter. What state are you in? It never hurts to have a personal recommendation from someone with a little pull.

[goldicedance]

Oh, Linda...so sorry about your problems.

Are you near a teaching hospital? That would seem to be the best place to start.

I don't have any other suggestions. I do hope you can find appropriate treatment.

Lois

[wareagle]

Hey Linda...sorry you're going through all this. My suggestion would be get that apt. with Mayo. There's absolutely NO reason why your GP can't call and get you set up with that. I mean after all...he can't figure it out and the specialist or at leaste the specialist's Nurse has decided that you're too complex of a case for him so tell them all to sit and spin and go see someone who actually Can and Will find out what's going on. That's what happened with me when I first got sick...mths of seeing doctors that just didn't know what to think and finally my GP sent me to Mayo. I would call and call and call until that office makes you an apt. (or have a friend/advicate do it for you). It's utterly ridiculous that these doctors can't take the time to make a simple referral.

Good luck hon...keep us posted!

[dizzygirl]

hi folks :0)

thank you gals for your support.. it means alot.

Wareagle...I did ask my pcp about going to the mayo clinic.. his reply was talk to the specialists about it!.. But going to mayo ive been thinking of that.. ..i actually was thinking of talking to my local cardio about mayo clinic b/c he has been fantatic in referring me out...

GOldie~ hmmm was talking a a dear friend of mine yesterday about this very topic.. while this teaching hospital are not close to me by no means....they are atleast in the same state! I was thinking of contact the University of PEnn.. in philadelphia PA.. my potsy frioend goes there and she has been treated wonderfully!.. she also mentioned another hospital there.. but i cant think of the name of it. I think there is a teaching hospital in Pittsburgh as well.. but would have to digg for info...

masumeh--i am in pennsylvania

persephone--love ya too! and no i havent checked out facebook yet...

tammy and nadine-thank you! uh no i do not have a regular neuro.. ive been seen by a handful in my home town and they have all told me that there is nothing they can do for me..

I do want to mention b/c i kind of feel that i was maybe a bit unfair to my current docs....in my venting of recent events.. but my current treating docs have been wonderful to me and i dont know what i would have done with out them in regards to getting diagnosed w/ pots.. and for all there help support and effort..but they have been great...

I went in for IV fluids over the past few days.. and it gave me a bit of a boost.. I felt decent for a full 12 hours or so!.. the brief break or lessoning of symptoms was something that i really needed not only for my physical body but for my mental/emotional body too.. b/c i honestly ive just had enough..

so i had a few hours of relief.. and now im kind of right back where i was 3 days ago....

again i thank you ladies for tour support.. means alot..

[Ernie]

Hi,

If Dr House were a real one I would also say to see him.

What does Dr Grubb suggest?

[DancingLight]

Linda,

Hershey Medical Center is another teaching hospital in PA along with U. the Penn and U. of Pitt. For you, Univ. of Pitt woudl be the closes I think? But you'd have to see if there were specialists in what you want to see there. I'm not sure Pitt is a teaching hospital? Hmmm....still a good hospital though.

Also, there is still the Lyme possibiliyt right? Have you ruled that out for sure? With all of your neuro symptoms?

I am sorry you are at your wit's end...I hope something will work out in scheduling another appt. so you can get the help you so need and deserve...

Sorry, gotta scoot, so gotta keep this short!

Emily

[Maxine]

Linda,

I'm so sorry you had to deal with yet another let down. You know I'm always here for you............

I hope you can find a doctor closer who will treat you like a human being, and take your heath issues seriously-----because your condition IS SERIOUS. I think you have a little angel in your corner, because the way you have been tossed around by different docs, I'm surprized your not worse off because of the lack of proper medical treatment.

From other past experiences you know what to avoid-------i.e.------- Dr.

Sorry-----inside joke, but dizz you know what I mean. I thought a little humor might pick you up a little---

You know me, I come from a family who likes to joke------you just have to have a sense of humor sometimes, or this stuff will take you down.

Linda, I'm keeping you in my thoughts and prayers-------take a deep breath, and keep fighting the good fight.

Love ya,

Maxine :0)

[ode_to_fantasy]

I would also recommend a teaching hospital or doctors affiliated with one. I've had numerous doctors turn down my case because it's too complicated and they don't know what to do with it, but then I found a university hospital. They actually go out of their way to figure out what's wrong. I've found some amazing doctors who are excited to have a challenge (and what a challenge it is :-p)

Best of luck to you!!

[dizzygirl]

MAXINE!!!!!!!!! thanks for the laugh!! heheh that is too funny! I dont think we will ever everf orget dr. mullet!!!!!! HA! may the prayers be with you maxine...

dancinglight i dont mean to sound stupid.. but is university of pitts. the same as UPMC??? in pittsburgh...?

also i have an appointment in 2 weeks to get the ball rolling on lyme...during that same appointment im getting the sleep study or at least referral to a sleep specialist set up...

I guess my whole thing that got me upset with these docs.. is that this particular office.. KNEW when i called them back in january.. waht i was looking for and waht i was dealing with.. so i was more then a bit stunned ot find out they cancelled me out all together.. and i had thought that ok maybe now i might get somewhere with this doc.. he is a neuro after all with knowledge of pots to boot!

and it was a let down for me.. b/c im not getting real far anywhere else.

But i have to hold on to the belief that everything happens for s reason and that when one door closes another will open...just have to keep plugging along i guess..

hugs and love to ya all

[Jersey Girl]

Sorry you are not getting the help and attendtion you deserve. Have you looked into any NIH funded studies you might qualify for? Just a thought. Martha

[Rachel]

Hi Linda,

I don't have any advice beyond what you've already been given. I just wanted to say that I'm sorry you've been treated so terribly by your doctors. I'm thinking of you and hoping you can find some help soon.

Big hugs,

Rachel

[AJVDK]

I just wanted to drop a line and let you know I was thinking about you. I am sorry its been so bad latly with the doctor. I will say don't give up. I was ready too, after I got sepisis in Jan. I felt like I was out of options, and I finally tired on last time, and I finally got some answers... when I found out I had lymes..... It may not be lymes for you but hang in there and hopfully they will find whats going on with you. Now I am on a treatment plan, and things are slow, but at least I finally gor a game plan, and the doctors are working on the ans stuff and the lymes, and I at least feel like I am keeping my head above water now!

I hope things will get better for you, and that with these appointments coming up that you fnd some anwsers.

Take Care!

[MightyMouse]

Hiya, and so sorry about the run-around you've been getting with your medical needs. Not sure what area of PA you're in, but this is a name from DINET's physician's list, and not sure if you've already tried him:

Richard Malamut

Neurological Associates of Delaware Valley

Crozer ACP - Suite 533

One Medical Center Boulevard

Upland, PA 19013

610-874-1184

Autonomic Laboratory

Treats adults

I have never seen him myself. Personally, I've had pretty good luck with the docs I've gotten through the University of Pennsylvania Health System--with one glaring exception of an affiliated cardiologist who did an echo and ecg and proclaimed I was in fine health and if I were his daughter he would tell me to go home and have a nice life and stop worrying about my health (I was sent there by my pcp after fainting while in my garden, then again in my shower, along with multiple daily near-syncope episodes). Okay, rant done. Nearly all of my docs are with U of P or were at some point and then went private.

I know it's really hard not to feel completely defeated and overwhelmed at the prospect of starting over with a new doctor, but please do not accept lackluster performance from any physician. If they're not worrying about you as you're feeling sicker, something is very wrong with that relationship.

Here's my new favorite quote which I will share with you:

"The biggest human tempation is to settle for too little" - Thomas Merton

Do NOT settle for too little care; we'll be here to cheer you on and help fill you batteries as best we can.

Nina

[dizzygirl]

thnak you nina..

I ddint even think to look on the physicians list!

uH no i havent reid this doc yet... where is Upland pa? oh wait im going to guess by the area code that its in or around philly? my friend with pots had had some good success with docs thru u of penn... I figure it cant hurt to check it out.. they cant treat me any worse then ive allready been treated by the medical community.. at least i hope not...lol...

thanks again!

[MightyMouse]

Upland is near Chester--not far from the Delaware border. He was affiliated with Crozier-Chester hospital a while back, not sure if he still is (hosp has since changed names). I've seen another doc from the same area, Dr. Goodkin, but only twice before I found someone closer to my home...

Nina

[lalalisa]

Hello,

I just wanted to say that I'm SO sorry to hear about your situation right now. I really don't know what to say except that I'm here to listen.

Can I pray for you?

Hang in here!

Lisa

[deucykub]

Hi, Linda:

Hang in there... a second breath will come and get you through this.

One other option for you - although a little farther away. There is a group of Neurologist POTS specialists that I see in Boston, Beth Israel Deaconess Medical Center/Harvard Medical School. They know POTS, and they know Neurology: http://bidmc.harvard.edu/display.asp?leaf_id=4351.

The appointment was pricey (~$2,500 due to the tilt testing) for me because my insurance is limited to the Connecticut area, but I didn't have to pay in advance. I'm just making little payments on it now until I can get back to work. They are also doing a POTS study and are looking for participants. Study = Free!

Keep smiling and laughing. Someone somewhere will figure this out for you!

[Miriam Poorman-Knox]

Dizzy,

I live in Pittsburgh and go to the University of Pittsburgh. I have an incredible group of doctors. Not all UPMC. Who are you seeing. Do you need a place to stay? I will be leaving May 31. But here until. I could be your tour guide and advocate. PM me your phone and we can talk. The neurologist I see, puts his geet up on the table and goes through all the information. Loves puzzles. My PCP Dr. Frank is the best vry hard to get in, there are others though who are excellent in the department. So when you are hospitalized really they know about pots, dysautonomia. Miriam