Connect
← Return to Living with Neuropathy - Welcome to the group
Discussion
Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Back in 2017 my husband and I agreed to make this our last effort to find help. The cost of all those years has really taken it's toll as well. I walked into Dr. Bluestien's office with a chip on my shoulder. The very first thing she said to me was "I have to apologize to you because your case has been mishandled in so many ways". Just the verification that I wasn't crazy made me have a meltdown right in front of her. I explained to her that this was the last time I was going to reach out. How amazing that I found her and even more so that she happens to have had a Tarlov cyst too. I couldn't be thankful enough.
When attempting to offer advice for anyone looking for help, I can't stress enough how important it is for you to be your own advocate. I learned this the hard way. For so long I would just believe whatever the doctor told me. Then slowly I started to see some red flags, things wrong with testing, etc. The list goes on & on. When you go to see a new provider for the first time, instead of looking at it like you are pouring all of your pain out to that person, look at it like you are interviewing the doctor. Basically, you are paying them for a service and therefore you need to have some say in the way they perform that service. Be confident. Have your "speech" ready ahead of time. Explain that you are tired of jumping around looking for a decent doctor that is willing to work with you. Stress that you are not looking for medications, you're looking for help with your condition and some pain relief, whatever that may entail. Watch for red flags. If they seem skeptical of what you're saying, don't seem to have much knowledge of your condition, don't seem to want to answer questions, etc. again, move on. Basically, don't take any crap! In the end ask them right out if they would be willing to work with you.
Subject change... Do you know what nerves go into the tops of your feet or what may be pressing on the nerves? I always have to look everything up and can't really find any info. on it. I'm a weird anatomy buff. I've had PN for a while now from the Tarlov cysts but within the last month the tops of my feet have really started burning like crazy!
Terri
Replies to "@rwinney Back in 2017 my husband and I agreed to make this our last effort to..."
Connect
You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place...my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc... which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.