Tami (boyfriend's mom) pointed that out immediately. She said 'well if your ms isn't bad and this is all in your head, why would you ever force someone to get on a disease modifying drug?!'

I was thinking that I should have pointed that out.

I asked if the lesions in my parietal lobe could be causing these crazy spells.. he said you don't have lesions in your parietal lobe.. see your getting this crap off the internet.

My MRI that I posted on here even talks about active demyelination in the parietal lobe.. so is the doctor that reads MRI's crazy too?

What concerns me most is.. he supposedly was a board member for the national ms society. I don't know what happened as to why hes not on the board anymore... but I am afraid that he has done counterproductivity for my case with disability.

He was also very touchy feely and I am not okay with that stuff. You're not my lover so don't rub my arms and hands and back. Everytime he would touch me I would pull myself away and made sure there was a look of complete disgust on my face.

I live in Springfield, Debbie, but I am still going to contact the Northwestern Clinic in Chicago to see if I can see someone there. If not, the psychologist recommended that I go to st. louis as he has two friends with ms that go there and get proper care. I think that man wrote in my favor.. he was slightly cold and rude at first, but after I started explaining how life is nowadays he seemed to do a 180 and was kind and compassionate.

I pray so hard that they have decided in my favor.. I'd be able to have health coverage and not have to go to that dirty nasty clinic ever again.

I hope and pray even harder that these episodes will stop so I can return to work. I miss my job and co-workers so much. I bumped into the owners the other day.. they told me if and when I am ready to give them a call and I will be on the schedule the next day. I am so fortunate to work for people that understand my situation, willing to accomodate my needs, and hold my job for the chance of recovering well enough to go back to work. they are such wonderful people.:)

side note: i am also super lucky to have the support system that I do.. I was hanging with my best friend the other day.. pulled out her birthday cake from the fridge.. started to have one of those crazy episodes.. next thing I know, I am on her floor, covered in her birthday cake. I was so upset for ruining her cake.. she was upset that I fell and didn't even care about the cake.. We had a good laugh tho.. :cool:

I'm so sorry this happened to you.:(:hug: You were looking forward to this visit too. Have you thought about participating in some type of study? Your care would be free and you actually get excellent care and more thorough exams. It's just an option if you feel like being a guinea pig. The one I did was pretty mild and only entailed taking Copaxone and either a steroid or a placebo (you didn't know which you received, or so they said but I had side effects like you get on steriods so who knows). Anyhow, my MRI's, blood work, exams, etc. were all free.

Anyhow, it is all in your head and spine too. We all get that and understand. :hug::hug:

Barnes Hospital in St. Loius has a MS clinic. I have been there twice. It has been a few years, but they used to have two women neuros that specialized in MS that worked in the clinic as well as other doctors. I felt that I received decent care there, and that they listened. St. Louis would be a bit closer. It is a research hospital, which has its own advantages and disadvantages. If you were willing to get into one of their studies, you would not have to pay for your MS medical care for awhile as was pointed out. My neuro referred me to the clinic when I was having problems with all the dmd's. I don't know if you need a referral or not. I am also not sure about their policy regarding insurance.

I also know that there is a MS clinic in Peoria, but I do not know much about it.

Dear AynaDee
 

I am so sorry you were treated like that. When I hear things like that on NT, I do get upset. I feel your anguish. I had a doctor like that too. I actually waved bye bye to him! Don't ever go back. In fact you can write a letter to American board of medicine and report what happened.
Please do not let one ignorant man, control how you feel about getting help. It took me several tries before I found the team I have now. Use your anger to the good, and look for a doctor who will listen. Yes bring someone with you every time you go in with that pain chart. If any doctor tries to dismiss you and what you are experiencing, do what I did, get up wave bye bye, and leave. I refused to be told what I was feeling was in my head too. How come I have fusion C3-7 if it was all in my head? See what I mean? He didn't believe me either.
Please keep on trucking. We will all be here to support you as you go forward. Don't let this stop you. I sure wish you all the best. ginnie:mad:

I have considered doing research stuff.. Some of it seems pretty scary.. But there was one going on in St. Louis at Washington (?).. it was of Vitamin D along with Copaxone.. I actually qualify.. so I wrote the number down and plan on calling first thing Monday morning. Hopefully I can get into that one as I believe that Vitamin D has a HUGE impact on MS.

I wish so very much I would have stood up and said goodbye.. I gave up on arguing and standing my ground pretty early in the appt and that is something I never should have done, but the more I argued the more upset I was getting which was leading to more of those bizarre episodes and my body flooded with pain and exhaustion.

and you're right.. it is in my head.. my neck and my spinal cord!

He also assured me that I don't feel electrical shock like feelings in my head.. he said I could poke your brain and you wouldnt feel that. I am certain those shocks are messages that are backfiring in the brain.. not positive, but pretty sure.. Doesn't your brain fire messages like electricity?

How is your walking now? are you using a device to walk with yet?

Yes there's a Washington U in Missouri...

Barb's advice sounds good too...Does U of I have any clinics down in Urbana?

I know Rush in Chicago has an MS center too, but I know several patients who go there and they are all on Tysabri...rumor has it that they are known to favor Ty, which I refuse to even consider...

I hope you can get some attention and care...and I wonder if you should cancel the Copaxone until you get some valid answers. I wonder if that quack gets some brownie points for prescribing Copaxone...what a jerk. You definitely should report him.

Keep us up to date:hug:

There are not any MS specialists in the Champaign/Urbana area. I think Washington University is associated with Barnes Hospital. The only study at the Un. of IL involves exercise and MS. I don't think it includes any medical coverage. Rather they pay you a small stipend for participating.

I'm so sorry this happened to you. Please don't let it discourage you from finding a professional neurologist and taking care of yourself!

Hang tough dear! It frosts my pumpkin (trying not to swear) when we, the patients, are summarily dismissed as "functional/psychiatric" simply because someone perhaps mentioned it in old notes as a rule out; or due to bias, or (often) because there is no quick, easy lab test that says X disorder. For some reason this label is more commonly given to women.

We go to doctors for thier help - we know something is wrong but perhaps we don't know what/or how to treat it. We look to the medical community to listen & to care. What we sometimes get is labeled or flat out called hysterical, liars or mental health patients. Can anybody tell me when compassion and the Hippocratic oath were removed from medicine... or was it replaced by ego and superiorority? I wish there was a lab test for mental health disorders (which would help those battling it) but alas, it is merely one person's opinion.

Mark him off your list. Write a complaint or a letter to the state medical review board if you feel it may help. Or just use your anger & frustration {which sound justly deserved} to propel you to somebody who will listen to you and help you. They are out there, they just can be harder to find.

Hang in there, sadly some of us have had similar appts, but know it does get better!:grouphug: