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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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Wow! What a fabulous resume. I may have to move to Wisconsin.😁
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3 ReactionsTerri, great job coming through with information. Perfect example of how we can help each other through Connect . I'm with @darlingtondoll and may move to Wisconsin too!
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1 Reaction@darlingtondoll and @rwinney
Thank you! I truly care for anyone in pain. I have suffered for 17 years now and have seen so many doctors that brushed me off and labeled me a "chronic pain patient" like I didn't matter, a few thought I was a drug seeker, many that didn't believe anything was wrong with me, etc. It's been such a nightmare trying to just find some help and a bit of relief from the pain. People don't realize the affect it has on you physically and emotionally. I wish I had someone to guide me to the right people. I have 4 providers that actually work together on my care and it's just so great. I hope she is close to me because I can also recommend my pain management and physical therapist. Dr. Bluestein has been so wonderful to me. She is the first doctor that has ever taken the time to read through my medical history from start to finish. She is also extremely informative and is willing to think out of the box. I was excited to find out that she has also had a Tarlov cyst so she completely understands my pain. She has people from all over the U.S. come to see her so why don't both of your make a trip? I know you won't regret it! 🙂
I am still looking for a neurologist. Nobody that I have asked can recommend a decent one within 100 miles and definitely not one that would be willing to recognize my Tarlov cysts. If anyone has any suggestions please let me know.
Take care everyone!
Terri
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2 ReactionsHi Terri
I commend you for enduring 17 years of chronic pain. As I'm approaching 4, I continue to adapt and learn more about myself and what I'm made of. It certainly tests one mental strength and is always inspiring to find someone like yourself who has been there before us. I crave finding a Dr. who wishes to make me priority and you are very lucky to have found Dr. Bluestein...that's awesome!
Best wishes to you.
Rachel
@rwinney
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
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3 ReactionsRWinny,
Thank You so much
It feels good that I'm not alone in this new horrible journey. I was wondering if you find it less painful when walking or standing up?
I have noticed lately that I'm unable to drive the car because the pain that runs down my left leg into my foot. Even after sitting in the car for longer than 20 mins I find it so hard to stand up straight.
Thank you for any input.
Ruth
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3 ReactionsDriving kills my feet! Numbness and cramping
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2 ReactionsWisfloj,
No, I haven't seen any doctor besides my pain clinic. She the one who had my nerve test done on my legs and feet. I seen her a week ago and she told me the results, as well as the name of my problem. What kind of doctor do you recommend? ( yes, I have put myself on a high dose of vitamin B12 as well as a calcium pill till I see the right doctor.
Thank you
For any helpful information
Ruth
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2 ReactionsIt's wonderful to hear from you all right away. I usely don't bother jumping in a group for anything because I never get any responses. So I would like to say " Thank You all So much"
Ruth
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4 ReactionsYou 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.
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3 Reactions