Hi. I'm online and happy to answer your question today.
Thank you for that very detailed post and medical history.
I am sorry to hear about all the difficulty you have been experiencing.
It sounds like you have spent quite some time trying to get to the bottom of what is going on. I am sure that your previous doctors have thought of, and ruled out, all of the common and easily treatable conditions that could be causing your issues. Would you say this is a correct statement?
I see that you are typing and that could mean a couple of things: 1. you are actually typing or, 2, the chat system has frozen up. I'll give it a few more minutes and if I've not seen anything from you I'll switch over to the Q&A system. That system works a lot like 'text messaging' but, unlike the chat system, it almost never freezes up. We can continue to work on your question there. :o)
i don't think so. other than the mono diagnoses, not much has been done at all. when i went to the dr in the spring with the weird fibro thing, they took some blood and said i was fine. some things i forgot to mention, i pretty much can't hold on to anything anymore, and i had carpal tunnel surgery on both hands several years ago. and at the end of last year i started having to use phenergan suppositories for nausea. as i said, the opthamolgist i saw in the spring just said - nope, dont' see anything. am waiting for appt with neuro-opthamologist, but seems like the symptoms are getting worse pretty quickly.
I don't like that things are getting worse at this point.
Well I think it might be time for you to take a very difficult, and bold, step to see if you can get some relief. It seems obvious to me that your current doctors have reached the bottom of their bag of tricks and, yet, you are still having these problems.
It sounds like you have been receiving good care from very qualified physicians without any significant lasting improvement in your condition. At this point I think the best thing you can do would be to gather up copies of all your medical records and travel to a large University Teaching hospital. At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
If you could tell me what large city you live near and how far it would be possible for you to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.
I know that this sounds like a pretty extreme step to take but, at this point, I'm not sure that seeing another private practice doctor, even if it is a neuro-ophthalmologist, is going to get to the bottom of what is going on. I think you need a team approach.....
Does this make sense to you?
I live in Kansas City and the neurosurgeon i saw was at KU. i am on disability, and was seeing the "civilian" doctors w/my medicare insurance but took my records out to the VA to see if i could get them to do the various referrals necessary, much of which is done on a fee-basis with KU. they have had my records for almost 4 weeks now, and as of when i was out there a week ago, was told they had not even looked at them. i have been made follow up phone calls both friday and today which have not been returned. when i took my records out to the VA i said in frustration that i wish i could be "put" somewhere and let all the experts do their poking and prodding and hopefully someone would be able to come up with something. of course that won
I worked in the VA system when I was in training and fully understand your frustration......and the uphill battle you are engaged in.
won't happen because as the nurse said, i'm not "critical". my ex-husband said that we would use all the funds we have available to take care of my treatment and that i dont' have to use the va, so i am going to go back out ther etomorrow and pick up my records. but where to take them?
I am, however, glad that you are heading in the right direction. The doctors at KU are very good.....but.....the one's at Mayo Clinic in Rochester Minnesota may have more experience dealing with very difficult and complex issues like yours.
Perhaps the VA system can work with Mayo Clinic on a Fee based system, that is if you can travel to the Midwest.
It is something to keep in mind anyway if things don't go the way you want as you continue to work with the doctors at KU.
I do not believe that the VA system, as good as it can be, is set up to deal with an issue as complex as yours. You really need a focused, sub-specialty, academic group to slowly comb through all that is going on and all that has gone on.....this, in my opinion, will give you the best chance a getting better.
Give the Mayo Clinic a call tomorrow and see what they have to say about using VA funds, sliding scales etc for treatment. What do you have to loose?
Here is there contact info:
absolutely not a thing. have already lost a lot, and am losing more each day it seems. thanks so much for your help dr. rick.
My pleasure. I wish you the very best.