[debralee]

Hello everyone,

It has actually taken me over a week to be able to talk about this. :worried: I saw my nuero. on the 18th of this month. My hubby was sick and I thought that the neuro. was going to talk about different treatment options for the hashimoto encephalopathy so I let my hubby sleep and went to my appointment by my self. Was I in for the shock of my life.


I thougth it was reasonbable to think he was going to talk about what would be the best next treatment options since the 2 weeks of prednisone didn't put it remission. (according to the case studies I reviewed this was not likely anyway) Instead he told me that he had decieded to not diagnose me. (It had taken me almost 12 years to get a diagnosis) I felt suddenly so lost and let down. I sat there for the first time in front of a doctor and just started crying. :cry2:He preceeded to remind me that he didn't like using prednisone at all......much less long term. He said that a friend and colleague had taken prednisone for a term and died from rare complications of it.

He said that all the treatments for HE could have many risky side affects and the most used treatment was the long term prednisone. He then continued to say that he wasn't comfortable with any of the treatment options available and that he had decide that I should go back to Johns Hopkins. I just started sobbing. How could he do this to me?

He knew that I had had a terrible experience there at Johns Hopkins and had in the past voiced my opinion that I would never go back there after the way I treated by the doctor. Yet....he was trying to force me back there. And all I could do was to continue to cry. I couldn't pull myself together enough to even get angry.

He just acted like everything was great. He said that he would set up the appointment for me. And that I needed to make an appointment to see him in 6 months. Then through my tears I just looked at him and cried....why? You don't want to treat me or diagnose me but you want to continue to see me WHY. Then he started to give all of this stuff that I he thought Hopkins was better equiped to treat something like this and that he could over see the treatment that they suggested.

So I did manage to ask him if he was saying I did have HE. He then told me that I do have all the symptoms and the bloodwork is positive..........but he just didn't feel comfortable diagnosing and using the treatments. So I had to go back to Hopkins.

There aren't any other nueros in this area. He practice is the only one and out of the three in this office Dr. B is the best one. So I don't have the option of seeing another local nuero. Baltimore is the next closest and it is 4 to 6 hours away depending on what part of Baltimore I need to go to.

The part that is the most upsetting is that after the office gets my sx. I keep getting referred back to hopkins. They want me to go back the the doctor that stood in front of me and told me that there was nothing wrong with me (after treating me for 3years). I didn't have a nuero problem I was going through menopause........and this was because he office had misplaced my file and he couldn't find it. Then when my husband and I left he sent a letter stating I need to be evaluated by a psychologist. A week after that I received another letter that he needed me to make an appointment ASAP that they found my records and he needed to go over the results to the bloodwork. I refused! He put me through you know what and for no good reason. That is when I started to see the doctors in Saulisbury.

So.....WHAT NOW? I don't know what to do. :wall: I feel so defeated at this point. :sadwalk:

Debbie

 

[Maia]

I'm sorry you had to go through that kind of appointment, and alone to boot. It certainly would be devastating, and frustrating.

I have to wonder... what the John Hopkin's guy wanted to do at the end of those three years when he wanted you to come back after reviewing the bloodwork? I get the feeling that he was acknowledging that he was wrong about what he had said/wrote previously, and that's why he wanted to see you ASAP to go over the bloodwork results with you. Basically, I think it sounds like it's worth one more attempt to go to John's Hopkins and see if you can get the official diagnosis, and treatment prescribed.

Do your research before hand as well, and go in their armed and educated and hopefully with your husband too to help support you. I have a feeling it will go better this time, and if it doesn't then1) it's only one more bad appointment and you've been toughened up after all this time/bad visits to deal with it well & (2) you may have to look out farther for help with this problem. Maybe in your research you can find another top notch expert somewhere that is in a semi-reasonable distance for you...

Good luck whatever you decide to do.

 

[LolaLola]

Dear Debra, I can fully understand that it has taken you a few days to be able to speak about this. I am sorry for you that this happened.
Travelling to appointments is an awful strain but may be necessary.
Hope Hubby better.
x Lola

 

[onetay]

Debbie,
Hi first off. Ok now you have had the good cry, and I know what you mean I did it too. You need to educated yourself on the disease and know what you are talking about. Then if you do go see that doctor again I would tell him he owes you a big I am sorry for what I did to you speech! Yes, he is a doctor but no one has the right to make you feel the way he did. I have said this time and time again the doctors work for you. You pay them for their services so that makes you in charge and it is your health you are dealing with. You have to be an advocate for yourself because you are the only one that knows your body and how it feels.
I am so sorry you have had this experience with 2 doctors. I have learned to take charge of my care, I do an interview my first appointment and am up front with what I want done and what I will not have done. If at the end of the interview I let the doctor know if I am comfortable seeing them and if I am not I tell them I am sorry but I do not think this is going to work. The look at their face is one of shock but I explain that I have one life, one body, and I have to depend on the doctor treating me do look out for my best interest, and I can't be affraid to tell you anything that is going on with me.

Ok, I have rambled enough and still am not sure I have helped you any but I hope you do what is best for you no matter what that is.
Tammy

 

[keebler]

Hi Deb,

I agree with Maia, you could give that John Hopkins doc another chance.
I am sorry you are going threw this.:hug::hug:

Take care,
Lyn

 

[KarolH]

Deb,

Gently hugs are being sent to you, first and foremost.

I wanted to let you know I agree with Maia as I had a Neurologist that belittled me and was pompous and degrading to boot. Long story short when the Neuro that I was treating with no longer practiced medicine I was forced to go back to this other doctor and dreaded it.

Turned out to be a awesome guy and I had a great patient/doctor relationship with him in the long run. John Hopkins is top notch in the country. Go back and give it a try but like Maia said, be armed and ready full of knowledge.

Knowledge is Power my friend. Good luck with what ever direction you decide to go in.:wink2:

 

[lazylegs]

Hi Debbie,

Definitely go back but request another doctor. I doubt you would feel comfortable working with the previous one. John Hopkins has many reputable neurologists on staff.

I hope you will be seen quickly.

Take care,
Lazylegs

 

[cad]

Hi Debbie,
you poor thing!!

I am really sorry for all that you have been through and after all those years this must be so so frustrateing.
If you have been advised to go back to your previous hospital I think you have 2 options really. You could request to see another doctor or you could go back to your previous doctor and put the cards on the table and state that you feel very uncomfortable because of the things that had occurred previously. The doctors oversights and losing your notes are not your fault but have had a direct impact on you when you are already in a very vulberable position.
He needs to accept the responsibility of this and apoolgise for leaving you feeking so awful. This might help you feel more impwered and more in control and alos it might make him aact a bit more like a human being and be a bit more understanding.
Don't feel subservient as the patient, your doctor is not a god and should be put in his place if his behaviour has caused you distress. I would just advise if this is what you do that you just state the facts very calmly and don't become confrontational.
I am currently wating to see a neuro in Feb as it is suspected that I might have HE too on top of everything else!!!

I really hope things work out for you.

Take Care

Cassie

 

[debralee]

I want to first thank everyone for your replies. I just got a call from my neuro.'s office today. It only took them 21 days to make an appointment with the wrong type of neurologist and to make matters worst the appointment isn't until June 27th.

I have decided to call Johns Hopkins myself tomorrow and go back to the neuro. I was seeing. As mush as a jerk he was to me he is the top in this field on auto-immune neuro. disorders.

I'm hoping this is the right thing to do...........I just don't know what else to do. I can't keep going on like this. The pain in my head is getting mush worst since coming off the prednisone. I'm not sure if it is from that or just all the stress.

I will let you know when I get my appointment and try to keep you updated.

Love,
Debbie
:rose:

 

[Katharine]

Hi Debbie,

It sounds like you have made the right decision. You obviously weren't going to get a correct level of care where you were. Hopefully if you do as Cassie said and "put your cards on the table" (gently but firmly) you can realign the relationship you have with this guy and rebuild that ever so important trust.

If that really doesn't work out then I think that seeing someone else at John Hopkins sounds an option. Possibly a difficult one (I don't know to what extent they all work as a team). I know that if I didn't want to see my neuro and wanted to see someone else I'd have to tell her to her face as in the hospital I go to they all work as a united team (no jealously would you believe!!). It's actually a great thing for the patient as info gets tranferred and if ever my neuro, rheumy or pulmologist is away I can see someone else who has all my notes up on the PC the minute I walk in and who is highly unlikely to change treatment without much thought and possibly discussing it with the other colleague first.

I hope it goes well. Try and relax as much as you can - I know, easy to say,

Katharine