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Frustrasted.. And Getting Worse


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im finding it hard to keep my head level about things... i recently had an apointment with a specialist.. a neuro muscular dr about my paralysis spells.. and they are kicking my behind.. coming in droves.. each one getting more and more intense...

So I was at this partcular dr's office for roughly 2 hours.. and i was feeling mighty sick.. YUCK.. I saw the student intern dr first.. and we went over everything.. I told them that i was basically looking for someone to eval me for periodic paralysis.. that i dont need management for everything else.. the intern looked at me like i had horns and a tail growing out of my head or something..

the acutal specialist came in was in the exam room not even 2 minutes.. 2 minutes is being very generous by the way....and he was such a JERK!!!!!!!!!!!!!!!!!! BIG TIME JERK!!!!!!!!!!!! I dont think ive even been so insulted ( yes maxine even worse then dr mullet!!!!) in my life by a medical professional and ive been treated pretty badly more then once..,... he was very condesending.. I left here so mad im sure steam was rolling out of my ears...

needless to say.. in one breath he said that i ddint have chiari.. but chiari was causing everything.. he based this one under 2 minutes in the exam room sitting across the room.. not even had looking at my films or nothing!

yeah aparently this dr had e-ray vision and could see in side my head with his ugly glasses on! GEZZZZZZZZZZZZZZZZZ...

SO>>>>>>>>>>>>> you all know i got my initial work up done in milwaukee.. the problem im facing is that im in a fincaial crunch of a life time and am not going to be able to get anything taken care of anytime soon...

mean while everything is getting alot worse... the only thought that grouchy dr had for me was to go see a surgeon thru the other hospital in town.. I was like Now tell me Dr S0 In-SO.. how many chiari surgeries have they acutally seen here? and how many of them had the issue that i have like dysautonomia? and the list goes on..

he had no commment really and walked out the room.. NICE!!!!!!!

So here I sit in a canoe with out a paddle... the pain is unbearable at this point.. my spine feels like it is going to cave in.. and it is afecting my breathing and.. and i think my heart as well b/c its been unruly.. I dont think we can go up any higher on my beta blockers...clonidine yes betaxolol nope....

i do feel at the end of my rope.. and quite frankly am tired of fighting day in and day out with all this.. all the while knowing that nothing is really available at this point to make it lesson... my local dr's who DO GET IT.. and dont say stupid things to ,me.. to belittle my intelligence or my "bizarre symptoms" they have done everything they know to do to help me...

im tempted to go to the ER to get something for pain and nausea as its been non stop for some time now.. and im having trouble eating or drinking.. anything i do get in me makes me really violently ill.. and i dont even want to bother with food... or liquids they are just as bad.. if not worse the solids i think sometimes....

shoot i lost my train of thought......hmmmmmmmmmmm....oh im tempted to go to the er to get maybe a lessoning of pain and nausea.. for a short time... and maybe they can check the pressure in my head b/c my head feels like its about to burst off my neck.....and my spine.. lord help me!!!!

i would be eternally greatfull if just something would let up.. and cut me a break...

thank god for my kitty .. he is such a love bug!!!!! he must sense when i go into a paralysis spell b/c he comes nd lays on my chest... or he will nuzzle m hand and lay by me.. till its over.. sweet little furr ball he is!

sorry for the depressing post.. but i had to get this off my chest.. i feel like im burdoning those around me.. so i keep my mouth shut... but here i can let it all hang out!

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Oh Dizz,

it is awful that you have had yet another bad experience with a specialist. Why can't doctors listen - the helpful ones do and that is what makes them special. I hope you find someone that you can work with to try to get some relief from your symptoms.

Lots of hugs,


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I'm sorry to hear you're having such a rough go... and that the doc you saw was such an idiot. Unfortunately, there are too many idiot docs out there and not enough good ones.

You said that you were diagnosed in Milwaukee? Can I ask what doc you saw there and what your opinion of him/her was? Milwaukee is the closest to me that I've been able to find a specialist, so I'd be interested to hear your feelings on the doc you saw there.

In the meantime, sending cyber HUGS your way!


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Hi Linda,

I am so sorry that you have seen another jerk. It seems that when we have an unknown or difficult to diagnose disorder some doctors because jerks instead of just admitting that they don't know what we have. They don't know the word humility. I can really feel for you.

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Dizzy, have you contacted the Muscular Dystrophy Association? They are the ones that are supposed to deal with paralysis. There are a lot of triggers for it, such as salt, carbohydrates, hunger (not eating, even if you aren't hungry) etc.

I can't tell you anything about chiari at all, but I can tell you I get miserable headaches when my potassium drops. I did not need a referral, just sent the closest one to me an email and got in quickly. You might want to try that, if you haven't already. I have found that so many of my problems are tied into PP, autonomic and otherwise.

I'm sorry you are feeling so poorly, been there, am there. morgan

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I'm so sorry you had to go through that--------- shocked3.gif

You obviously have something wrong back there in the back of your head/upper spine, as your ANS symptoms are more extreme then the average POTS person. You have more brain stem signs, meaning that the structure back there can't be normal. I'm not a doc, and I say this based on what a couple of other surgeons/docs have already found on your MRIs. It just seems like common sense to evaluate this situation more if I was this doc-----------ugggggggggggggggggg!!

Two minutes huh......... Man this guy must be so full of his own ego, that he spends the rest of his time seeing who he can insult next. How can he assess your condition in 2 minutes????

I feel bad for you dizz, this is really a bummer. I wish you could find a good neurologist locally to help you with all your symptoms, and figure out what type of testing you need to find what might be causing these paralysis spells. It makes perfect sense to see a neuro muscular doctor, but apparently this particular one isn't willing to take you seriously-----------he couldn't make that more obvious.

Sorry this guy is actually worse then Dr.-------- mullet.gif

I didn't think anyone could be as ignorant as Dr. Mullet. (fictitious name)---------- :( .

Anyway, know that I'm thinking about you Dizz, and praying someone gets their act together enough to help you.


Maxine :0)

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Morgan- YUP the MDA was the organization that made the appointment for me.. and i explained to them about PP as well.. that appointment was a complete and total waste of my time and energy...(what little i have) ... SO im just going to have to keep searching i guess and hope that things dont keep getting worse.. and that i can get the piece sof the tricky puzzle figured out...

b/c I feel horrible.. and this state that ive been in for months now appears to be my new "normal" and i hate it!

Im trying to get some sort of game plan set up.. as far as surgery things are concerned.. that is a stroy for another day tho....

but i appreciate the support on here for you all it means alot....

HUgs to you all


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oh, I am so sorry that you had such a hard time with that "idiot" of a doc. ;)

No wonder that you are feeling frustrated... I fully understand...

But never stop looking for a good specialist. I am sure there must be someone out there willing to help. The thing is that it is not always easy to find the most appropriated one. But you will find him or her... And when you remember this idiot doc, you will laugh...

You have my support too and best wishes to find a good neuro as soon as possible and close to your home

Take care,



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Hey Dizz, so sorry to hear about your appointment. I had a similar experience last Summer with a genetics specialist. Some doctors are such dorks. I've now decided not to use any doctor who doesn't come my way via a recommendation from someone I personally trust.


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Hey Dizz, so sorry to hear about your appointment. I had a similar experience last Summer with a genetics specialist. Some doctors are such dorks. I've now decided not to use any doctor who doesn't come my way via a recommendation from someone I personally trust.


Echoing MM here.... Been around THAT block too many times already!

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