Docs have me all confused

[Guest Julia59]

Hi everyone,

I really need you input if you have it---or are able to post. I have recenly been seeing a new neurologist in the past several weeks. He has told me in so many words that he refuses to continue as my neurologist if I mention anything more on TCI-(The Chiari Institute). He said I was mis-diagnosed, and if the chiari is misdiagnosed then so could the retroflex odontoid-aka-(deformed,tilted C1 with pannus formation growth pressing on the brainstem), cervical/cranial instability, the congenital cervical spinal stenosis, herniated disks in C7-T1, T1-T2, C3-C4, L5-S1-------which actually shows on the reports.

My first diagnosis actually came for Dr. Heffez in Chicago. All these Docs are very good at what they do, and are very well respected in the medical community.

Now I am being sent to The University of Michigan (Ann Arbor) to another neurosurgeon on May 18th.

My SSDI attorney said it does not look good that I "travel" to see Doctors/Surgeons. It looks as if I seek out a diagnosis to qualify me for SSDI. Well I travel a whole few blocks to see Dr. Grubb---here in Toledo.

I called my local Doc today to let them know what this local neurologist has said---and how unprofessional it is to talk to a patient that way. He is supposed to call me back. I'll be suprised if he does.

All I know is how I feel. More near syncope, weakness, fatigue, gut mobility issues, leg and arm numbness/weakness, swallowing difficulty, and of course the POTS issues----yada yada. The other night I went to cahnge my position as I was laying on my side, and something on the side of my neck popped out and made me see stars. I felt like a ligament tha ran the length of my neck on the left side. And now I have a lump in my throat that is noticed more when I change the position of my neck or bend forward. I get worse-------and the Docs get me more confused. Dr. Grubb has taken this all seriously, but he is my ANS Doc, and it's not fair to bring this up to him. I did ask the nurse to have him call me when he gets a chance to advise on another neurologist.

I'm done with my rant----any advice-----ANY ONE?

Julie :0)

[sunisshining]

Doctors confuse me too. Lots of the time they are CERTAIN of a diagnosis (even if u know it's not true in your gut), and much/most of the time, they don't know what to think or think you're crazy. i think it's because they don't like to admit that they don't know something so they're hoping u have something THEY know about and if u don't, then they treat you like you're crazy, instead of looking into other possibilities.

About the doctor talking to you in an unprofessional manner - happened to me this weekend and many times the past 6 years. Not fun because even though you know they just are having issues, it makes you feel lost, frustrated, and like you'll never find an answer. when this happens to me, i start doubting that i have something wrong with me...but from my symptoms, i know that's not true.

And i've had doctors overlook stuff. for the most part they've mostly been right that nothing has been majorly wrong with me, but they have overlooked other stuff. Maybe you said this, but who first diagnosed you? unless that person just had an ego and just diagnosed u without proof, which i find kind of unlikely, but, the ego part is more likely, you do need this issue addressed.

i know it's frustrating because you feel like you are running out of trusting places to turn. but, just because a person has an md doesn't mean he/she is God. Some of them think they are (some are very nice though, so i'm not saying all. and i know even the ones who don't get along with us help other people, so they're still helpful...), but they aren't.

i don't know anything about the lawyer thing. sorry. i can see where your lawyer is coming from, but ANYONE who's ever had a condition like this, knows that, we are, indeed seeking out a diagnosis - not for kicks, but so we can feel better or at least know what to do next. And i think that that is a right every person should have. but maybe if doctors across the world were better connected and informed each other, we wouldn't have to travel to find one who could help our problem.

sorry that this confusion has left you upset. but, help is somewhere around the corner. just because this one doctor treated you horribly (and i'm sure many others have done this to you before) it is not the end. he/she is ONE doctor and there will be one out there who will know how or be willing to learn how to help you, and will want to. a rare breed for us pots people, but we're here for you. you are not a bad patient, he was being a bad doctor and obviously didn't want to help you more, which is what doctoring is not all about. it's not like we're drug addicts in search of meds. but i know that's how they treat us at times.

sorry u had to deal with this.

but we're here for you! any time! altho i don't understand completely because i'm not u and don't have all of the stuff going on that u have, i do understand how miserable arrogant/ doctors who lack compassion can make u feel - in addition to the pots.

HUGGGGGSSSS!

love u LOTS,

sun

[Ernie]

What treatment plan is this neurologist offering you to improve your symptoms? If he has nothing to suggest then I would find another one. You already have 2 reknown specialist backing you up.

I find that the more many doctors study the less they know. Most people who are not in the medical field know that we are sick but these (*&(* don't want to know it. You have to find someone who is backing you up.

Ernie

[Guest tearose]

Hi Jullia,

I'm not very energetic tonight so I'll get to the point. Just know I feel deeply for all that you are dealing with and want you to keep on the warpath!

I think the attorney is being straightforward with you. It is not his opinion, it is the "system" that is going to judge you. I went with a top notch attorney, did my best and the ALJ turned me down. Even though we appealed, I have no belief that I will get coverage. The system is big and not real. I have months of limited stamina and weeks of improvement...this is my life. I know I can't do any better and I am inconsistent. All it takes is "one good day" or "one good hour"and I feel blessed....the "system" will interpret this another way. Your attorney is only trying to help you.

As difficult as it is, you MUST have a neurologist that is on the same page as you. Yes, you need to get another opinion and re think what to do. You need to be more confident with who you are working with.

take care, tearose

[Guest Julia59]

Ernie,

I Can't say the neurologist isn't offering a treatment plan. He is trying to help me with pain management. But it is hard to believe he wants to help me if he doesn't believe half of my health issues. I'm going to stick it out a litte longer, atleast until I get this third opinion from the surgeon in Michigan.

Tearose, yes I do need confidence in my Docs---I need them to understand and back my up. As I said to Ernie, i'll try to be a little more patient with this one for now. Patience is not my best virtue--------- . Also, Maybe i'm just fed up with everything---(some personal issues too) ,and i'm taking more offense then I should from my lawyer. I'm sure she is just being straight with me---as I well know that SSDI is not easy to deal with. You kind of set my mind at ease regarding my attorney----I'm glad for that----- I am feeling very vulnerable, and I am definately not myself.

I ran into my old PCP Doc in the grocery store tonight-----she was so sweet. I really hated losing her. She is now woking as an ER Doc. She asked how I was, and told me to stick with my Guns with this neurologist.

Now SSDI wants to send me to one of their Psychologists to check for cognitive impairment in May. Another one of those paid evaluations that work for the benefit of SSDI.

A special thanks to you all --Ernie, Steph, Sun, and Tearose. You all have enough on your own plate, and you still take the time to answer my whiney self.

Julie :0)

[Guest Julia59]

Tearose,

My attorney said it was possible to work partime and still get SSDI benefits, as long as it is under a certain amount---800.00 and something, I can't remember exectly. I can't believe you got turned down because you tried to work. I would think that if they saw you try your best and you still had problems---that it would be even more proof for them. I still keep you in my thoughts and prayers on that one.

I truly am not a patient person---I need to work on that. I have this trait from my father. This makes everything seem so much worse when my patience is limited. Don't get me wrong, I'm not a mad dog or anything like that--just impatient..

Gosh---what SSDI get's away with -------UUGGGGGG-----

Julie :0)

[corina]

Julie,

I want you to know that I'm very sorry for you. It's awful when your doctor says that you're misdiagnosed while you have the proof that he's wrong about it. You HAVE to see other doctors all the time because you need to be diagnosed properly (not sure whether I express myself right, brainfog, but I wanted to let you know how I feel for you). This seeing new doctors has NOTHING to do with getting SSDI, it has EVERYTHING to do with getting your life back. Wish your attorney would understand that.

Wish you all the best and know that I'm thinking about you,

Corina

[mom4cem]

((hugs)), so sorry that you have to go through this.It is so frustrating dealing with some dr's. Just went to my gi doc yesterday and he took my pulse and it was 96. He said it was not acceptable. I told him it was very warm outside, I work outside with kids in the school and I did not drink much and I was pretty sure it was just the dysautonomia kicking in. Did not seem interested in that. Pushed me to take more beta blocker and called my cardio., who I know exactly what he will say too.

Hang in there!!

[sunisshining]

((hugs)), so sorry that you have to go through this.It is so frustrating dealing with some dr's. Just went to my gi doc yesterday and he took my pulse and it was 96. He said it was not acceptable. I told him it was very warm outside, I work outside with kids in the school and I did not drink much and I was pretty sure it was just the dysautonomia kicking in. Did not seem interested in that.  Pushed me to take more beta blocker and called my cardio., who I know exactly what he will say too.

Hang in there!!

<{POST_SNAPBACK}>

yeah..96 unacceptable..i get so frustrated with docs....but at least he wasn't saying it was because u weren't exercising enough. i got a hoot out of the fact that at first my cardiologists thought i was deconditioned and that was why my heart was constantly 100 and up. and then it occurred to one of them that i was riding my bike to classes every day and trying to walk most places and that i didn't seem THAT deconditioned. and then they had the nerve to say they discovered pots - after they said i wasn't active enough and maybe it was a psych problem. i could blame them for this latest pots hole because i was trying to run even when i felt horrible...but i won't do that. whatevs.

why can't doctors just be on the same page???? (rhetorical question..if anyone had the answer, the world would be a better place)

good luck! feel better!

hugs,

sun

[Guest tearose]

How's it going Julie? What did you figure out regarding the neurologist?

Please be sure that the $800 per month reflects work that you can do now. I thought it was "after" the decision and when you try to go back to work that that amount reflects.

As for me, I tried to work and believe I was going to get better. Even though I became terribly ill the fact that I was paid the full time amount but worked only part time is what the judge looked at. My employer wrote and explained the accommodations that were made and how he insisted on paying my regular wage out of respect for me...the system worked against me because of honorable intentions...I am letting go...

good luck, tearose

[morgan617]

Man I wrote this big response earlier and my puter crashed and now it's gone, as is my brain tonight. Will try again tomorrow. thinking of you Julie! morgan

[morgan617]

Julie, I guess what I was trying to say last night is, yes, unfortunately ssdi will perceive things the way they want to. I have had the same pcp for 20 years and all the docs I went to, he sent me to. None were out of state or area, although we did attempt that. What I don't understand is why anyone would think people would want to have something that causes them to feel like a pariah. And pay money they don't have to prove it. There are just so many people that abuse the system, the rest of us have to pay for it. Slimebuckets.... I will tell you, the psych guy I saw was really nice. He was very sympathetic. I was very open and honest with him and he seemed to see that. He has a large private practice so I don't think he actually worked for the ssdi people. I didn't have to see a doctor. I don't know why it is so different for some people than others. As far as this new neuro goes, I guess I would just say, okay I won't talk about chiari, but you'd better have a plan of action in mind, if you won't consider this. Some doctors just don't know as much as they should, or don't like being told what's wrong, or are just arrogant jerks. As long as he had something in mind to do, I guess I'd give a little wiggle room, but if he doesn't, it would be bye bye now. Hang in there. We are all pulling for you! morgan

[Guest Julia59]

Hi everyone, and thanks for all your responses!

Yesterday both Dr. Grubb's office called and Dr. Schwisow who is my PCP. First I was surprised Dr. Grubb's office called as I called them on Tuesday to tell them I changed my mind about asking Dr. Grubb to recommend a Neuro because I didn't want to bother him with this. But Dr. Grubb looked anyway and had them call me with a name of a neurologist.

Then I was surprised again as my PCP has never called me, he usually has his nurses call. Well, he suggested that when I go the The University of Michigan that I ask the neurosurgeon to recommend a good neurologist that will take this seriously. First the neurosurgeon has to take this seriously though.

So apparently it does look like the neurologist is out of line with his comments as my other Docs know the true impact this has had---and that in itself shows the problem is REAL.

I e-mailed one of the moderators of the WACMA (world arnold chiari malformation association) discussion board with this issue. She said regarding his comments TCI Doc not being published on PUB -Med, and several medical journal boards is false. First he must not know how to spell their names as they have written many journals. Also, regarding TCI not being associated with a university hospital---FALSE AGAIN! They are funded through a major university hospital in NEW YORK.

Apparently this Doc is quite Bold in his assumptions----VERY BRAVE. I have not decided what I am going to do regarding weather or not I will stay with him. I will wait and see what I find out with the neurosurgeon in Mi. Dr. Bolognese is probably the doc I will stay with---although it is a long drive to NY. I feel safe in thier knowlege in chiari, but mostly in their experience with cervical/cranial instability which I know beyond a shadow of a doubt I have. It has been diagnosed by Dr. Bolognese, but the way my ncek/cranial area feels is enough proof. It's just not normal for it to feel like tiny razor blades are poking up between the neck/cranium area every time I tilt my head back even slightly. Nor is it normal for ligaments to pop out and make me see stars. I am also starting to have respiratory issues---which can come with upper spine and brain stem compression. This was told to me my the pulmonologist. This is the real deal---and I want REAL HELP!

I feel very glad that I stood my ground, but I am still a little leary of my visit to the Michigan Neurosurgeon. But one thing I can say for sure is that I will continue to stand my ground, as my neck and lower brain mean a lot to me, not to mention the other area's of my spine that is now having problems. I'm sorry to vent, but I have had some really bad days lately, but still, I don't have it is bad as many others do. I feel blessed each day that I can putt around the house and do mild chores, and maybe walk about the store bit. The store is getting harder I notice---Meijers is a big store and I had trouble navigating last night.

All I can say is thank goodness for the Docs that DO support us.

Wishing you all well, and thank you again.

Julie :0)