Just curious to see if there are people out there that have been to the Neuro Dept at Emory for their neuropathy. I've got an appointment on March 25th to see what they can offer for my small fiber neuropathy.

Thanks

Debi from Georgia

I'm really torn about whether to keep this appointment or not. My husband wants me to keep going to my local neuro and wait until he's tried all he can do before I go to Emory.

Most people are telling me to go and see what they say. The trip will be hard even through ATL is only an hour away....then we'll have to deal with the wheelchair in the hospital.....no way I can walk that far. I hate stressing about this !

Many of you already know my story.....small fiber neuropathy....zero A and C fibers in my feet due to diabetes and 6 rounds of chemo. This effects my feet, legs and upper right arm...sometimes my jaw and teeth. Current meds for this are 1800 mg of gaba a day and 90 mg of Cymbalta at night. I'm still not where I want to be in reference to the pain. I've only been using this neuro a few months. And my journey is pretty new.....going on 10 months now.

I would appreciate any comments or suggestions even if you have not been to Emory

Debi from Georgia

Debi,

No one can tell you what to do but if it were me, I would go to the appointment
because I'd never know whether that would have been the appointment where
I found help. I had PN pain for quite a while before a pain doctor told me about
Lyrica and for me Lyrica has been the best med yet.

I've had PN for over 19 years I got it after having Guillian Barre Syndrome.
I take a combo of vicodin and Lyrica which takes the edge off the pain and has
the least side-effects. Nothing I've found has made the pain go away
completely. Baring a medical breakthrough, I'll never be pain free.

In the beginning I had a lot of trouble with depression and anger but the love
of my family has kept me going and I've resolved to make the most of
my life and take each day as it comes. I've found that a positive attitude can
help a lot.

Best of luck to you,

Steve

Hi Debi, I agree with Steve. No one can tell you what to do, but I feel that you owe it to yourself to leave no stone unturned in your desire to have a better quality of life. From your previous posts I can only gather that you have accepted your diagnosis and adequate relief of your pain and discomfort are what you are now looking for now. You have been given this opportunity and it just may provide some solid answers for you.

Take care and good luck-CeCe.

I don't know anything about the Emory but if it were me and I made the apt I would keep it.

An hour drive reading a book or taking something you can do that you enjoy the will fly by before you know it.

The wheel chair folds up just put it in the car no biiggy who knows they may have valet parking and can help you or they may even have their own wheel chairs you can use. I would call and ask what accommodation they have.

You can still continue with your other doctor why not? All your doing is going for a consultation and peace of mind.

You mention chemo treatments is whatever you had them for under control.

I have an apt with a Neurologist next month and my primary DR put me on the garbapentin.

This is new to me too with it at this extent of numbness, burning, and the whole nine yards.

I should have thought something about it years ago when I think it was starting slowly.

Like you I am a Diabetic I thought my sugars were fine but the more I read I know they weren't. my A1cs ranged throughout the years as 6 7 even an 8 last year.

Like now my feet on top burn a little I keep busy or get a blue bag from the grocery put ice In it and put my feet in that. It really helps most of the time unless it's really bad then nothing is going to help.

I wish you luck at the Emory I hope they can help you.

I hope my opinion helps a little and gives you peace of mind,

Hi Debi,

I agree, as you know, with the other responses. Only YOU can decide. Another opinion can be a good thing but there is a drawback that I can think of but do not want to be negative. What does one do with another opinion IF it differs from one you already have? Then you have two different opinions and don't know which way to go. Do you then get a third? I am a firm believer in second opinions and more if necessary. I have also been in a situation where I had different opinions and did not know what to do. Which one do you accept and do you reject the other? It can cause anguish. I don't have the answers. Just questions. Again, I believe in additional opinions, and as many as it takes to find the best solutions and peace of mind for you.

Since your appointment has been such a long wait, being made months and months ago before they could get you in, the one thing that I would fear if it were me, is to cancel and later want the Emory opinion and not be able to be seen for yet months and months in the future. You have 3 weeks before you need to finalize your decision. Take the time and see how you feel (both physically and mentally) just days before your appt.

I think the decision would be easier for you if you did not have to travel so long and far for the appt. If it were local, it would be a bit easier to decide.

I can't begin to tell you how many docs I saw over many years before I got answers and proper treatment. Sometimes the quest is long. You have been through so much and have had situations where additional opinions might have been beneficial. Trust yourself. You will make the right decision for yourself. To help ease the emotional stress of going back and forth in your mind, Yes vs No, jot down all the pros and cons on a piece of paper. Sometimes just putting it on paper can help relieve the mind from the constant thought of it. When it is on a piece of paper, you can lay it down for a time and rest your mind. Then, as the date draws nearer, you can review your paper and it may help in your decision. Just an idea. Trust yourself. You have a great head on your shoulders and you will know what is in your best interest.

Hope

Hi Debi,
Your husband sounds like mine. My husband does not want me to go anywhere else because he thinks it will muddy the waters. We have already been to several doctors. I think he is afraid of what hopeless spoke about. Another opinion may leave me confused even more.

However, I think as caring as they are they don't realize our need to have answers. From what you have written it sounds like you really want to go. As Steve said at this point if you don't go you will always wonder if they could have been the one appt that gave you answers.

Good luck with everything! Hopeful