Extremely Disappointment In My Appointment At Cc

[dizzygirl]

so i went to the CC yesterday.. and i must say that im quite disappointed in the care and the attitude that i recieved. it put me in tears

I feel the it was a complete waste of my time my money and my extremly limited supply of spoons and energy i had to travel there alone!

OK nothing potsy was really adress.. most of my questions where blown off and said that that isnt something that is dealth with in that office..or just plain ignored... so i got a boat load of referrals.. to docs that to be very honest.. i do not have the finanical capability to travel back and forth to 5-6 times over the next 2 months... not at 80 dollars a trip..and i dont have the faith that they will do anyhting anyways...

the dr was annoyed and standoff ish.. ive seen this doc before and i never had issues.. and now that i really need help i feel that i was "wasting the dr's time"...

isnt a doc that treats pots suppose to be able to help or try to help with pots symptoms? that ARE potsy things!

i mean the only thing tha was recommended to me was to go to cardiac rehab.. and i asked how am i suppose to do that when im getting worse? and can barely function most days? response.. this will help..

well you know im all for trying cardiac rehab i have some real concerns tho before i do this.. and some even bigger concerns for as why im getting worse..

i dont mean to sounds or look like im not willing to try something to get better.. b/c i am i have i do and i am willing to in the future...

But there is something wrong..

last weeks spell was even address i started to mention the bee stinging and i was told to see a neuro b/c that is a neuro problem.. do you all iknow how many neuro's ive seen in the couple of yrs.?????? I mean really!

I have a neuro here at home that ive spoken with about this.. as well as pcp and cardio.. and my primary pots dr... they all dont know..

i feel really frustrated.. im about at a loss of where to turn...and honestly am quite tired of being treated like im a looney bird... when i know in my heart that something is wrong! something serious.. the things that im going thru dont fit with pots.. and im getting worse...

the doc actually told me to open the phone book and find a doc to treat my pots and other things at home... Uhm Ive seen 3-4 neuro's in my home town.. 3-4 cardio's.. not mention a handfull of other docs.. come on the town i live in isnt that big...!... ive seen the docs that are here.. and they can not help me..

the point i was trying to make and explain was that it wasnt that my dr's here at home werent willing and ddint try to help me b/c they have.. But they have hit roadblocks.. and my level of symptoms and the fact that i havent responded to treatments.. over the last 5 yrs.. there is nothing more they can do for me....

why is that hard to understand? i wasnt speaking badly of them.. just telling thr truth.. that they dont know waht to do for me.. and that is why i was there..

I was upset yesterday.. and potsy..and wouldnt you know that my BP was perfect yesterday for my appointment? depsite how i felt? in order for me to get to cc.. i drank 2 cups of undiluted chicken broth.. to give me boost.. and it certianly gave me pressure a boost.. tht is why my pressure was normal.. tobad that my pressure "being" "normal" ment that i felt better!

thanks for letting me vent....

[Gracefulprincess]

Sorry you're having such a hard time with doctors. I had a horrible appointment yesterday too. I was at the neurologist because of migraines and issues with my arm, and i was trying to explain that my other dr thought i had fibromyalgia. And the neurologist was barely listening to me. And when she finally decided to listen to what i was saying, she said that they don't believe in fibromyalgia and that i don't need to be there. Basically she was saying that fibromyalgia isn't real and that i don't need to be wasteing their time. Like you i was very frustrated and disappointed with her....i wanted to slap her silly.

i hope you find a dr that is willing to listen to you and can help you.

[JenniferInOhio]

I'm so sorry you can't find a doctor to help you

I was also disappointed in my appt. at CC. I was in tears at my appt. when they told me I had POTS and then expected me to leave - without any information on treatment or at least some sort of patient counseling. The doctor actually asked me why I was crying.

Again, I am sorry. I wish I had the name of a wonderful doctor to give you.

[lloppyllama]

Wow that is awful! Its hard to believe there are so many doctors out there who specalize in things and wont be willing to help people in the area they specalize in! There are also alot of good doctors too, it just seems like its alot harder to find those!!

Hope you find the right doc to help you soon!! Good Luck!

[Angelika_23]

Hi Linda,

I am sorry you are having such a terrible time. It sounds like we are in the same boat.

I don't know why some doctors have to act like that. I know there must be good ones out there. I will pray that you find one. You are not loony, and it's okay to vent.

Try to keep your spirits up,

Angela

[april abbott]

I had an appt. with a neuro a few years ago, right after being diagnosed with dysautonomia from a cardiologist. The cardio tried to treat me, but I just got worse. I wanted a second opinion on the diagnosis, and figured a neuro could better treat my condition anyway.

Well, I had no insurance, but the neuro agreed to see me. Despite being in a financial strain, it had to be done. When he came in he did a basic exam. Checked my reflexes, bp, etc. Asked me some questions, and when I offered some basic knowledge to him about my condition, he questioned why I had such medical knowledge, and insinuated that I was some hypochondriac that searched through medical books to find a disease. He seemed uninterested, and actually had the nerve to leave in the middle of my exam and say hi to a friend after some woman (who never identified herself) came in laughing and said he needed to come say hi to so-and-so. I just sat there in shock. A few minutes later he came back in. I asked about the huge rash that covered my entire body, and he said he didn't know. Didn't offer to test it, or refer me to anyone for it. Never drew blood, or did any tests. Took my b.p. again lying down and said "You don't have dysautonomia. If you did, your b.p. would be much lower when you're sitting up. There's nothing wrong with you." He said there was no sense in doing expensive tests on me because there was nothing wrong. Gee, I'm sure that had nothing to do with the fact I was uninsured. He patted me on the back, and said I was stressed because I was a new mother, and if I was still having problems in 6 months, just come on back. Bam. $150 for that craphead to walk in the room and tear me to pieces. This was a point in my life where I was very ill and could barely function. I had no money, no insurance, and now was being told it's all in my mind. I had been sick for over a year and was at my wit's end. I left there sobbing, and at this point I believe that his "diagnosis" just gave my family ammo. that confirmed that "nothing was really wrong".

I'm sorry you had to go through what you did, but I'm glad you shared your story. As you can see, most of us here can relate, with very similar horror stories. Stay strong.

[bren62]

I understand your situation and know exactly what you are talking about. I just had my daughter down to Vanderbilt earlier this week for a clinic appt, not as a research patient. I was amazed that the cardiologist listened to my daughter's heart sounds through 2 layers of clothing, one being a sweater. Her heart rate and blood pressure were all on their good behavior and he concluded her autonomic system was working fine.

It's ok to vent and you are no alone with feelings of being misunderstood and not taken seriously. It's very frustrating when the specialist only look at the pieces and not the whole picture.

[MomtoGiuliana]

I am so sorry that you didn't get any help after going to so much effort and expense to see a specialist. It is hard to understand why a doctor would treat anyone so badly. Yet, many of us have similar stories. I was treated badly and blown off by a few physicians (ob/gyn, gp) until I was so very fortunate to find an EP 30 minutes away who treats POTS and is a very kind and compassionate person. Your issues are extremely complicated. I hope you can find someone to help you soon--it probably needs to be a team of physicians working together. This alone may make a specialist (if he or she is irresponsible, over-worked or just lazy--who knows what the reason is) not want to get involved unfortunately. But, there are good docs out there. Don't give up.

Katherine

[LilySnick12]

Our thoughts and prayers are with you! Sorry you are having such a difficult time with Doctors. Been there, done that, shed the tears.

My daughter is 17 and had been ill since she was 9. We went to Mayo Clinic in 2005. Just by reviewing her medical files they already knew she had POTS. We went there and they ran a few additional tests which all supported that. What a relief to know it's real and you're not crazy.

We had seen many doctors locally and where told it was because she was a menistrating female or it was anxiety, common in the teen years. I even told a Doctor that if he gave them that line I'd slap him!

U of M Hospital Ann Arbor, MI Dcotrs has been wonderful. Also, we found a great PCP who is willing to try alternate treatments and is willing to learn. We take her POTS info and she does review and research it. They key is our Doctor cares and she listens! Unfornately today with the HMO insurance we often get take a number, cookie cutter care.

We are doing massage therapy to help with muscle pain, and B-12/B-complex weekly injections to help with the fatigue. Having a support group to vent also helps!

[PattiL]

Unfortunately, I think most people that have gone to the CCF have had a very similar experience. The Dr. there is good at diagnosing but not much else. No follow up whatsoever. i'm glad she wasn't the first Dr. we went to regarding POTS, we just went there for a second opinion.

Are you able to go see Dr. Grubb in Toledo, or at least Beverly in his office? Either one of them would spend loads of time with you and are very understanding. It's very difficult to find a local Dr. to treat POTS, much less one that has ever even heard of it!

Good Luck in finding someone. Hope you're feeling better.

Patti

[Maxine]

I'm so sorry Dizz. I was so hoping this appointment would lead you in a direction for good medical care.

Did you mention anything about your abnormal MRIs? I would think the doc would have sent you to see a good neurologist or neurosurgeon. All you can do is try. You can't find a good doctor unless you go see them----but unfortunately it seems that some neurologists seem to be the worst culprits in being dismissive of this disorder, or just plain dismissive of anything. I can fully understand your trepidation in regards to seeing yet another neurologist. Unfortunately, it might be the only way to get more answers. Can you PM the name of the Doctors she referred you to?

Did you have a referral to that one doctor that cancelled your appointment previously. I thought that was terrible, because he was a neurologist, and has ANS experience. I still don't understand that. Maybe you could get his e-mail and send a summarized view of your recent health issues along with a description of your abnormal MRI results. Go over the head of whoever you talked to on the phone----as you don't seem to get anywhere when trying to talk with the receptionist-----

After dealing with the nasty symptoms I've been dealing with I continue to fight for the right care, and it looks like I'm getting somewhere. I still have a long way to go though. It's really hard, and very depressing sometimes. I've been in your shoes several times, and I sometimes think Doctors just don't take woman seriously----period. And the ones that do are overwhelmed with a huge patient load.

Don't give up dear---------------keep fighting.

Hugs,

Maxine :0)

[AJVDK]

Sorry to hear about your appointment at CC. The one thing I can say is I had to fly out to CC for test and to see the DR. there. IT set me back alot of money also. They one good thing for me is I got a DX finally. The bad thing was that there was no real follow up, and it more of DX place, find out whats going on with you, but I felt more like it was up to my local doctors to fix it. I even left with orders one was for Cardio Rehab, but due to the orders being out of state I was never able to get it done back home. I was upset that I finally now whats wrong but still have to fight to find treatment. In fact two years later, I am still fighting all the POTS sutff, now more then ever after starting the lyme treatment, and I still seem to be fighting a losing battle when it come to treatment.

The only thing I have in my favor is my family doctor keep trying new things and is not will to give up on me. Although some times the way I feel, I feel like giving up with oushing to get better. I somtimes thing maybe I sould just give in and learn this is my life. But to me ay 28, I should not be stuckk in most of the time, havn't been able to work in almost 2 years, I have no life. I don't want to give up hope! I just wish that these doctor would understand, when we go for another option, for help, that we really ned it and that we really want to get better, not just say you have POTS.

Again, I am really sorry to hear about your appointment keep your head up. (((((((HUGS))))))) form Iowa!

[Sunfish]

linda -

i'm sorry that your trip/ appointment was such a disappointment. having dealt with numerous frustrations myself (as many of us have) i can imagine how frustrated you must be.

maxine -

i think it is unfair to categorize neuros as being the worst culprits in regard to dealing with ANS/ POTS issues. while that may be your experience, there are neuros who do have an interest or specialize in ANS disorders. while i had a horrific experience with one (at one of the "best" hospitals in the country), i've seen several who have been very helpful over the years.

melissa

[Maxine]

Thanks for pointing that out to me Melissa-- I guess I should say based on what I have seen, I'm sure others have had some good experiences. Although you had an awful experience with one neurologist, it looks like you were very fortunate to finally get some Docs to take you seriously.

You would think that considering the ANS is such a vital part of our NS, that it would be common sense that a neurologist would know more about the ANS. That's why so many of us seek their medical expertise.

I don't blame the neurologists solely, I think the problem runs deeper then that-------------(The medical world is one big fat bureaucracy.) ------------Perhaps they don't have the opportunity to help us, but all to often the patient is blamed, rather then admit they can't help us. Patients end up in the middle, and this can be dangerous.

Tomorrow I'm supposed have ANS testing at the University Hospitals of Cleveland/Case Western, and then see a Neurologist who also has knowledge of the ANS. I heard he is good, but I'm not sure about the followup. We'll see what he thinks of my complicated case.

Sunfish------------this is how it looks from the outside looking in, and I should say this is based on what I have seen----(not just my own experiences, but from 6 years of listening to OTHER PEOPLE'S stories. I am certainly not an authority on this subject. Not even close-----

Maxine :0)

[nadine]

Linda-

Sorry about your disappointing trip. I just wanted to say that I tried cardio rehab about a year into my NCS and it was very difficult for me. My medical condition is far worse since then, as I am pretty much homebound and unable to work or drive. I was willing to try anything at that point, but it was a lot of treadmill, arm pedal exercises, stationary bike, that kind of thing, could not do the rowing. There is no possible way I could do any of this at this point. I was working at the time and was so stressed trying to get the time out of work to fit the schedule and I was the youngest - at 44. My BP was always low and constantly had to drink more to try and raise it.

It just doesn't seem that your current health status would make you a great candidate for this, but I may be wrong. I am not sure what type of exercises they would have you doing. I could not do any of the above at this point for sure. Not to mention getting to it.

I am sure you have done other in home or outpatient PT over the years and know what you can push yourself to as far as limits.

The good thing about the rehab was having the monitor on the entire time and having it all recorded. That was helpful.

Stay hopeful---

[ocugirl11]

Hey hun,

Doctors aren't always fun. I get sick of all the testing they have to do to find "there's nothing wrong with you". I understand the craziness. But I will say I have the greatest nurse practioner! She is amazing. I love her! Her name is Beverly Karabin. She is Dr. Blair Grubb's assisstant. And I can't say one bad thing about my experience with them. Bev is soo caring and listens to everything I say. She always talks in "doctor talk" and I hardly understand any of it. I always say to Bev, "ok now can you explain it to where I can understand it?!" And she smiles and comes and sits by me telling me what she just said where I can understand.

I've only seen Bev 2 times now. The first time was when I had my tilt table test done and she was the one to diagnose me with POTS. She was amazing. She came in and put a blanket on me and rubbed my head telling me everything was going to be ok. She went through a power point explaining POTS...what to do...what not to do....treatments...EVERYTHING! She asked me if I had any questions....she even turned off the light because she could tell I had a migrain! I didn't even tell her I had one, she already knew! I'm telling you all shes AMAZING! She gave me a huuuge hug and told me she is going to help me!

The second time I went she came in and sat at the computer typing in more information we gave her about how I was doing and when she got done with the computer, she came and sat by me on the hospital bed and rubbed my head and reassured everything was ok. I can't explain how great she is. She gives me hope. She's AMAZING!!!!

I know most of you aren't from Ohio. But Beverly is located in Toledo, Oh. If you would like contact information I can give it to you. But you get into them much fast by referral from your doctor. I got into Beverly VERY quickly.

I hope you all have some better visits. I will be praying for you all!

[dizzygirl]

thank you all for your support and suggestions...