I don't want to deal with doctors anymore..
 

Hello everyone..

I finally found a neurologist.. I wish so much I had the one I saw back in May.. but since he left the country I was stuck with the neuro at the health clinic.. yeah the clinic that I always have issues with..

This neuro is a retired neurologist that is still working. He's prolly 70-80 years old. I was optimistic about the appt. but that quickly changed when I met him.

I told him that I was there to discuss the results of my MRI and EEG that were performed in June..

He wasn't interested in that, but more interested in "I really want you to take a few different drugs to help your brain chemical balance" and also to lower my "adrenaline levels".

I stopped him and said that was not a concern at this time and also no part of the reason for the visit.
I knew with him saying that within the first 90 seconds that this appt was going to go a different route than I had planned.


I didn't even get to discuss my symptoms. I pulled out my symptom log and he told me that that shouldnt be necessary.

He told me it was impossible to have my right leg feel heavy and numb.

He said all the things I am experiencing are in my head.
None of the things I say are happening are really happening.
That I am immature and need to act like an adult as "you are 25". :confused:

It seemed to me that he was very upset that I have educated myself on this disease and on things that could be making my quality of life better and easier.

I explained how the electrical vibrating shock that I have had for quite some time, is still happening, but now its like someones taking a torch to the entire right side of my body.

He also said that was impossible and made up.

He forced drug therapy on me for over an hour so i finally said fine Ill take Copaxone.

I am not okay with that.
I am not okay with how I was treated.

Oh yeah.. my primary care physician (at the same clinic) bailed on me supposedly he was not with the clinic anymore.

awkward moment.. while i was in the room with the new quack doc looking at my mri images.. primary care physician walks in and sees me and about crapped his pants.. he just turned and left abruptly.

I dont understand how nor why i was treated the way i was yesterday. I am not okay with it.

I am considering sending a letter but feel that will only be worse.

I totally should have brought my boyfriend with me. Or even his mom who has witnessed me struggle everyday.

I am scared.. Genuinely scared for my health and future.

This man says cluster lesions aren't a real thing (although I have been told by two different neuros that I had cluster lesions on the left side which was impairing my ability to walk) and that I just read problems with ms online and just say I am experiencing them.

It was like a horrible dream I couldn't wake up from I felt cornered. and like everyone there was against me.

I don't even know what to do. I don't ever EVER wanna go back :(

Ugh! What a ****. These are the same kind of docs who start treating you like you're crazy if you show the least bit of emotion that you don't like what they're saying. I fired my last doc who told me my thyroid symptoms are in my head, to go see a shrink. Went immediately to an endo who actually helped.

I'm still upset about yesterday's visit for me, but gosh, yours was bad.

Any luck finding a different one? I know, another months long wait. When I was looking for a new one, age mattered. So many of them are older. My last was at retirement age, which I didn't know when booking, and he did retire less then a year later. All that guy wanted to do was dx me with diabetes (which I don't have, not even close). They just say "here is some meds, now go away".

If it was the same clinic as your prior PCP, do you think he looked at that past info, looked at some wacky notes that guy made, and just decided it's in your head based on that?

Im sorry to hear of your crappy situation as well! Why must the docs treat us like this? I know what im feeling. I just dont see how you can meet me, know nothing about me, and say what I am experiencing isn't happening. Its so stupid. Ms is alot to deal with by itself.
last night I was in rough shape due to him getting me so upset. I cried multiple times. That really upset my body. Muscle spasms, spasticity, and jerking kicked in high gear for the rest of the night. Awful.horrible experience.

OMG!! Ive been thru the exact same thing! Many times before I got my dx. Don't walk, RUN to another neuro!! This crap about all being in your head, I would get up and leave. Don't do copax if you don't want it. Don't let anyone force you into doing something you don't want to do! Im sorry, Im ****** for you right now! Them old timer docs really need to call it quits already. My first neuro said it was all in my head and I needed a heavy anti depressant. I could barely walk, lift my head, hands, etc. Ya, in my head all right. UGH!
(I apologize ahead of time to moderators if I used any language I am not suppose to)

I'm sorry that you've experienced this as well Kittylady. It gives you the most horrid feeling of loneliness. And nothing against the older doctors.. But if you're going to stay in the game you must keep up with things. Keep researching, studying, teaching yourself all the new studies and evidence.

I do as a patient, so why not you Mr. doctor man?

I don't ever want to encounter him or that clinic or any similar situation ever again in life. I don't bring people with me to my appointments because I feel that as an adult I can handle my own. But apparently I need to have someone with me every appointment.

My boyfriend's mom wants me calling 2 different cities near me where there are well known neuros and seeing if I can schedule an appointment with one of them.. I don't think without a referral from the new guy that I can do that. And I'm scared. I am not quite sure what the proper move in this situation is..

Plus I have no insurance at all..

I talked to some guy the other day at social security, trying to let him know that I was seeing new doctors and he said he didn't and couldn't update because they have already made a decision and it was sent for review and that I would probably be getting notified within a week or two.

I'm really, really not sure about starting Copaxone either. :confused:

This just stinks, Ayna and I'm so sorry about this stuff, to which
you have been subjected.:( Just unacceptable.:mad:

I will pray that, soon, you acquire a good Neuro and PCP, who
know what they are talking about, to validate your illness and
treat you with the respect you deserve :hug:

I'd get the MRI disc and a copy of all of your records from that clinic. It is your right to have a copy of them.

Have a look at what the doctors have been exchanging about their assessments at the time of your visits and of your test results in their written notes. I think that you may find an answer as to why they are treating you the way that they are. Whether correctly or incorrectly noted, it does sound like somewhere along the line one of them may have made a comment about their opinion of your mental health and from there it has grown legs.
If you do make that finding, you really need to get out of that clinic all together and go elsewhere to start afresh; as you will probably only get more of the same from there.
Shameful.

Sometimes people get lost along the way and doctors are no diffferent. Just because someone has MD behind their name doesn't necessarily mean that you should do business with them...and yes, it is a business for them. Shop around. That too is your right. Explain your financial situation to them when you find a prospective neuro and you might find that they have some ways of accommodating that.

In my thoughts with well wishes that you find a caring and professional neuro to help you.

With love, Erika

I don't go to neuros any more. Part of this is because I have another disease, Polycythemia Vera, which requires monitoring often by a hematologist, and several blood tests a month. My neuro symptoms I take care of as well as I can with supplements, diet, stretching. My pcp prescribes any neuro drugs I need such as Klonopin. I never tried the MS drugs because I could see from what's written on the box that these would not be likely to go well with me.
I hope you can find some ways to deal with the disease without the strong MS drugs, but if not you will need another neuro. so get cracking. And may you be blessed with a great neuro. I had a really good one many years ago at Scripps, but he must be retired or gone to Greener Pastures by now.

No one should be subjected to being treated as you have been under any circumstances. I say "ditto" to all the prior responses you have received.
Find someone else for sure.

About the age of docs......... some of the "old" ones turn out to be the BEST ones but that certainly was not the case for you. Try checking out the age of the doc before you go in Vitals or Healthgrades or something like that online. You can also check out the "patient satisfaction" reviews by patients that have seen the doctor.

The youngest doc I had ever seen turned out to be the one I had the most contention with after a few years. He finally got smart with me when I disagreed with him and he very sarcastically asked me "How many years had I spent in medical school?" My response was "As many years as you have lived in my body." And that I knew my body at lot better than he did. That was my LAST visit with him.

Find a doctor that will listen.

I give docs a bit of slack as they do see a lot of people that are not what they portray for various reasons, and they carry that with him and tend to have that color their opinions to other patients. Make it clear that you need to be HEARD.

When I was younger, I would have never stood up to a doctor. Now that I have aged considerably, (smile)........ I DO stand up to them and say, WAIT, just one minute, did you HEAR what I said? Do not just move on, walk off, throw pills at me, etc. We are a TEAM and if you are not willing to be my team member, and help me, then I will find another team member. I put my life, health, and well-being in the hands of my doctors and I have come to believe that I DESERVE respect, and help and will not tolerate less.

Wow, that made me sound brave........ no, some times I too get the rush treatment and no answers and all the stuff we have all encountered. Even by some docs that I dearly love and respect. They are usually just having a bad day or very back-logged and I let it go for THAT visit but if it continues, I speak up.

I wish you luck with finding someone and soon. I am so sorry you are suffering.

No matter what YOUR age or the age of the DOC,...... you DESERVE to be treated with respect.

I am so so sorry you were subjected to such treatment by a physician. Yes, get your records. I was amazed at how much erroneous info gets written in a medical record.

Thank you so much Sally! :hug: I've been praying as well, so hopefully double strength will give it that boost ;)


Erika- I totally feel as if that's the problem. I didn't know I could ask for a copy of them. Can they change stuff before it is sent to me? I truly feel that is the problem.. I know they talk about me because I hear them when I am waiting in the room.. and yesterday when at the appt desk to schedule follow up for the Copaxone, I realized I had left my MRI and EEG readings in the room so the receptionist buzzed me back in where all of them were standing and instantly all stopped talking with the flushed deer in headlights look, so I am assuming they were talking about me then as well.

Also, do I have to have a referral to see a different doctor?

Mariel- in 2011 I stopped seeing my neuro, quit taking Rebif after two years, cut out red meat from my diet and added vitamins along with flaxseed oil, fish oil, and grape seed extract. They really help, but it seems since December they aren't doing the trick. I really need to cut out yeast, dairy,and eggs as well.. see if that maybe helps.

Anya Dee,

Some specialists require you to have been referred but many do not. I have made appts. directly with specialists without any referral.

Call the docs office and ask if a referral is required.
Check out Vitals and/or Healthgrades online to find out about a doc before you make appt.

BEST RESPONSE EVER! :ROTFLMAO:

In yo face doctor man! booyah! :p

:ROTFLMAO:

ohhh you checked that man and that's great!

My pre-ms days I wouldn't let anyone talk to me this way.. but nowadays I get intimidated and scared and I coward down.. and that's lame.. definitely need to start bringin someone as a support system so I won't.. they'll help me stand up for myself. :o

I am usually a very meek mild mannered person but I had enough and he really pushed my buttons. Illness has done the exact opposite to me as it has to you. I have become very different personality-wise. I am now short tempered, easily irritated, and no longer avoid confrontation.

Since you get intimidated, which I did when I was younger, I would definitely bring someone with you.... that way THEY can be the "bad" guy to speak up and it will not be held against you.

You really deserve to be treated much much better. I really do hope you can find someone and soon. You need to be heard and helped.

Ayna, just realized your from IL. Im originally from IL, have you tried Northwestern Medical Clinic, Ken and Ruth Davee Dept of Neurology?
Right there in Chicago. Not sure how close to Chi town you live. But its an excellent center. Gather your records and make and apt. Or google and see if there is a close MS clinic near where your part of IL is.
Practice Number: (312) 695-7950, its attached to the school of medicine so you know they are up to date. Hope this can help you, even if its just alittle. No one did this for me when I was getting dx, so I want to give you all the ideas I can to help you along this difficult road. Hugs all around, we're here for you :grouphug:

"Can they change stuff before it is sent to me?"

That would be falsifying medical records which (at least in Canada) is
against the law.
It is unlikely that they would do that, as they often don't know that you have requested the records. Processing that sort of thing goes through the office staff and some medical offices have a deisgnated medical records person to take care of copying records.

With love, Erika

I would call the Chicago office of the Nat'l MS society; they have a caseworker who can guide you through the maze of finding a neuro who will take patients with no insurance.
i wouldn't think you'd need a referral since you don't have insurance co. paying your bills...
I see Daniel Wynn of Consultants in Neurology in Northbrook. Not sure if he takes patients w/o insurance...

Definitely take someone with you next time. You need an advocate, no matter how wonderful the doc is. It's also always good to have a second set of ears to catch what we don't;)

Keep us up to date, and don't give up. I am convict-avoidance also...so I don't always get my questions answered. But I'm getting bi%$hier as I get older:p

Medical records won't be altered and like Erika said they likely won't even know you requested it.

I'm not sure but it might not be so easy for someone without insurance to get in to a specialist for something that is as chronic in nature as MS. :(

You all help me through such crappy times.give me hope when I've lost all of what hope I did have. And I want you all to know I am very grateful for all of you!!!:grouphug:

I live in Springfield. But my boyfriends mom said to find a good neuro that will accept me and she'll drive me to wherever that be.

I will definitely look into the chicago northwestern.

I have plans of researching and making lots of calls today.

The quack doc is sending a thing to copaxone to get it for me. Said it'll take bout 4 weeks.

Should I call the office and tell them not to do that?

You are not being "lame" nor a "coward". It is very difficult to stand up to docs sometimes. I have kept silent out of respect in younger years and still do sometimes but respect is a two way street. Docs need to respect their patient as well as get respect from them.

According to "The Patient's Bill of Rights", you deserve respect. It is very sad that patients sometimes have to "demand" it.

Don't ever take upon yourself any disrespect from someone just because they have an M.D. behind their name. I am not advocating that YOU become disrespectful, just that you not tolerate being disrespected.

You are NOT lame and NOT a coward. You are a victim of a sad excuse for a doctor.

If it's all in your head, then why is he forcing Copaxone on you?
Whether you want to take anything that nutzy Neuro wants you
to take, is your choice. With Copaxone, you won't know if it's
helping you or not, for up to the 1st year anyway,so you could
wait to see what your new Neuro recommends?:hug:

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:

Takes me back to those "all in your head" years...so many of those years. Until my first MRI, which showed lesions, and other tests which were positive. Still some disagreement as to whether I had it, from various doctors. About 50-50 each way. Problem may be that I also had Porphyria, which has some symptoms like MS and some not too common in MS.
But I did get help from the Swank Diet right away...it worked fast for me, but they kept giving me Porphyrogenic drugs until I got the second dx. Getting rid of the Porphy drugs was a big big breakthrough for me, but it came late in life, when I was already through the menopause and on disability. But my dad and his mom NEVER got dx'd, except in restrospect by my hematologists.

Surely the office will have an office manager that you can write an official letter of complaint to. Also the state board of health. Always make copies of anything you send off to some one. Some people also send their letters by registered mail to make sure they actually get signed by the department they are to go to but I know that costs money. Medical schools should be wonderful as far as having up to date physicians. When I was working as an RN we had one patient that really needed a cardiac procedure but had very little insurance and it wasn't approved. Well it needed to be done and his doctor wasn't going to say no. Our hospital was a training facility for family practice residents through a local school of medicine sattelite setting. So they set it up that some of the residents had to watch the procedure and the charge wold go through to the school!!! So there is always a way. Good luck. You deserve it.

there is almost nothing more defeating and deflating than ignorant comments from a doctor we trust with our lives. its demoralizing. can you tell I've had one or two of those. Make sure you get copies of your ENTIRE file. I wish I'd had the sense to start doing that early on. And try to find a way to see another neuro. you deserve a legitimate doctor who care about your health.

I know you will get through this....I pray it is soon and you are able to get quality treatment sooner rather than later.

learning
 

I am surprised at how common it is to not be listened to. The wildest is has been is when the Dr thought I was seeing hallucinations. Others saw it too. Long story - and gross! I have been having "spasms" (for lack of a better word) on one side of my body. This with intermittent blurred vision, and bouts of not able to focus on what I am doing. All tests are normal. I feel for you, and hope you find someone who will listen. Looks like we are NOT alone. Don't give up. Things have to get better.

gosh you guys! :grouphug:

you give me the comfort that I SHOULD be getting from the neuro!

I should be using at least a cane, but I'm a stubbornhead and don't want to use it, although, it prolly would help conserve some energy.. I just stay really close to walls or countertops and everythings gravy :cool:... kinda.

I think you're right Debbie. I don't think it would be a good idea to start a drug that I was cornered into. We didn't discuss how that could help or anything. Just "you have to take a DMD!"

I have been feeling pretty craptastic the last few days..

The tightness in my back has been near unbearable.. (usually is my first sign of flaring)
Woke up on the 17th with my lower abdomen numb. Woke up the 18th with numbness spreading up the right side. the 19th the left side now numb too. 20th, right leg in the knee cap area numb. Now today I have the left leg to add. So in 5 days my body has become super numb. My legs feel heavy, stiff, tingly and uncomfortable. My abdomen is SUPER numb today. So very uncomfortable. and I am assuming this means another flare.. even though I just came out of one. :rolleyes:


I have stayed inside as the humidity levels jumped through the roof. and I have been sleeping so much the last few days. But I know it's needed. So I sleep while I hope and pray my body does some healing in that time.

Makes me kind of nervous to wake up each day because it seems to be worsening and spreading instead of lightening up.

I am going to write a letter to the medical board and make copies of them.

I never got a callback from Washington University.. So I may wait another week and then callback.
Peoria might be a good call.. My best friend lives 30 minutes away so we could even stay there so it won't be too bad of a drive..

and if my symptoms continue to worsen I suppose I'll go to the hospital.. But I refuse to go with just numbness.. If it continues at this rate, I assume my walk will be severely affected. In which case I'll go to the ER. Maybe with my MRI and EEG results and have them discuss with me?

Thank you all so much for being such an amazing support group! :grouphug::hug::grouphug::hug::grouphug:

AynaDee-

That is the biggest and best reason for this group - support and help for each other :grouphug:

Thank goodness! I would be a lost, lonely soul without you all! :)

Oh no! I'm so sorry you seem to be heading for another flare. You have had such a tough time with MS and how it is manifesting in you and your so young.:hug::hug: It really breaks my heart and brings tears to my eyes. Literally, I'm typing this with blurred vision from the tears.

How close is WU to you? Is it close enough that you can go in to their ER if you need to? If so, I say go for it. Once you are in their ER you may be able to get in to the neuro department easier. Plus, it has been my experience that teaching hospital ER's really do have a better understanding and knowledge about MS and how it effects our bodies, including internal organs.

I hope you start feeling better. Please let us know how you are doing.:hug:

Don't be upset or sad! We all are fighting the same battle! :hug:

WU is only about an hr and a half away..

I just received a letter from social security yesterday saying that I have been approved for medical and they're making a decision on the non medical and will be hearing back soon. Im not sure what all that means, but im thinkin/hoping its good news. If I don't hear back this week ill have my boyfriend take me to WU.

Ahh this could mean that id get a REAL doctor!! So exciting just not allowing myself to get all excited in case good things don't follow. :cool:
:grouphug:

Good for you Ayna. So glad that things are starting to come
together for you.:hug: