I had tests in April, over 5 weeks ago for an autoimmune disorder. This disorder is most likely what caused my TN and ATN and is still causing some pain. Long story short...I had an MVD in Oct of 2012 and it was about 90% successful. I was ready to go back to work, when I was hit with the same kind of TN pain, but in my arms and legs. I also developed severe carpal tunnel and was and have been unable to walk normally and have pain all over. I ended up being referred to a doctor who specializes in finding answers to "weird" disorders and he did find something.
I spoke to him 3 weeks ago and he said he wanted to talk to my neurologist, that I had a rare auto-immune disorder ( would not give a name) and I needed IVIG therapy. Its now 3 weeks later, my neurologist has called him multiple times with no answer, and I have no treatment scheduled. I call at least once a week asking for an update and I get nothing.
I am between a rock and a hard place and have no idea what to do, this is a very well known hospital and the only Doctor that ever believed me when it came to the issues I have, but I cant wait any longer for an answer, its mentally killing me, plus I may lose my disability or my job if this isnt resolved soon.
Please feel free to offer any suggestions, or if you have had the same issue, feel free to vent away. I cannot believe that I am in this position. Its like a carrot dangling in front of me that is just out of reach. I seriously think I may lose my mind.
Wendy, I am so sorry to hear that you are going through this! I wish I had some suggestion for you, but it seems like you are doing all you can at this point. Is there a patient advocate at the hospital, or maybe some one in charge of the specialists department that can help you find out what the hold up is? It is torturous to make you wait like this.
I hope you get some answers soon. Please keep us updated, and know that I am thinking of you.
Christine
Thanks Christine, I am going to contact Patient services. It will be 6 weeks on Wednesday since the tests with no resolution. I will let you know once I hear something,
I have the results, in a round about way, just not a name for the disorder, which would be helpful or any timeframe of which treatment will start. They have thier own lab, so the results were ready in a week to two weeks
Well that’s just absurd! The dr won’t give you an appointment to discuss the results? I have never heard of such a thing. Keep calling anyone and everyone until you get somewhere.!
Hi Wendy, I agree you’re doing everything right, definitely call patient services, it can’t hurt!
I’m sorry too that you’ve been going through this, the least he could have done was give you a name for this disorder!
Sending positive vibes that you get answers soon!
(( hugs )) Mimi
I really think showing up in person is your next step. Or if you can make a dr apt with the dr and when you get into the room with the dr tell him you need the answers. Then he will have to give you some explanation… Praying for quick answers for you.
I called patient services today, and recieved a call back from the doctors office ( its over an hour away from me, and I can barely walk let alone drive right now) anyway....they said they were sending a message to the doctor that this was an emergency and to wait until the end of day today and he would call.
The problem is, I have no idea who is supposed to treat me...
This doctor was booked for 8 months, my neurologist called him and got me in sooner when I first saw him...I will ask him about an appointment if he ever calls. I will just say, I am dealing with probably one of the most famous hospitals in the country, so I expected better.
I am very sorry to hear of all you are going through with the Doctors, you are going through enough. With that said, understand it is too far to drive, but keep calling and calling, keep going up the ladder. No matter the reputation of the hospital you do deserve better. Booked for 8 months, fine, but you can't wait so what is the next move, you are important, don't let them blow you off, they work for you, yes, we need the Doctors, but if one can't fulfil that, there has to be a next step. My husband was in the hospital 2 1/2 years, yes that long, and boy did I learn you have to be an advocate and fight, it is crazy you have too, especially with my TN, there were days I thought for sure I would lose it, I had my own issues, but you just have to be the squeaky wheel, this is to me very wrong, you would think health care people would be there for you, and found some that were, but you just have to keep at it, like I said, sucks when you feel like heck, but you deserve answers and this amount of time is just plain crazy. No matter how understanding or good the DR is if you can't get to him it doesn't matter. Also know what I have found so often, the DR himself has no clue what the staff is telling you. You will be in my thoughts and prayers, Betsy
Hoping that the doctor will get back to you, it sounds vey frustrating. You are doing the right thing by ringing repeatedly, don’t let them fob you off.
Do you have access to any type of community transport for patients that could get you to and from your appointments?
I would call them EVERY SINGLE DAY and pester them until you get your answer. Don't be mean, just be really sweet & pester them every day.............like a bee flying around their heads, LOL. Or better yet, go to the office and see them in person and try to find out what is going on. Let us know how it works out!
Harass, harass, harass. Make them know who you are by your voice because you call so much. I had a big work up done for autoimmune disease too. (IgA and IgG issues.) One of the blood tests took 8 weeks. But it seems like this Dr already knows the results, so there’s no need for further delay.
Ok I finally got a hold of the doctor that diagnosed me, apparently thats all he does and he has told this to my neurologist. He is the only person with his credentials in the US, and he teaches and lectures, so he does the diagnosis, then sends you back to your neurologist for care, and he will give them advice along the way. He told me that what I have is an auto-imune disorder and he will do the paperwork to get IVIG approved since he did the diagnosis, but my neurologist would handle any other meds and eventually take over all my care in this. Appparently my neurologist did not like the fact that this doctor is calling the disorder Sjogrens , even when its not. The diagnostic doctor said this is common when you have no real name for a disorder to get the insurance companies to pay for treatment. I finally talked to him (diag doc) on friday and let him know that now I am not hearing from my neurologist ( he spoke to her last monday) so he prescribed prednisone to help me out with whats going on, and it has taken the edge off. Now the issue is my neurologist isnt returning my calls, I left two messages last week and called again this morning. My gut feeling is that she is not going to play ball as they say and doesnt want to tell the other doctor that.
The Diagnostic doctor is at Johns hopkins, the other doctor is at Sinai in Baltimore, I ended up there because the neurology group in Delaware sucks!!! So i am dealing with two different locations, which seems to be making this worse. I really think the doctor at Hopkins is really trying to help, and if it wasnt for him, no one would have found this, so I dont want to push too hard. I have been telling doctors for 20 years there was something wrong, and it took TN and an MVD for me to find in a round about way, someone that was qualified enough and interested enough to find the real issue.
sorry for the long note, hopefully I will hear from my neurologist soon, if not, I asked the doctor at Hopkins to see if one of their neurologists would help.
Glad you are asking the specialist for a new neurologist, as that would be my suggestion. It sound like you may be getting closer to some treatment, and possible relief, but are still getting a bit of a runaround. Please keep us posted, and know I am thinking about you!
Christine