Living with Neuropathy - Welcome to the group

@gashmell Hello!! I'm also from northern WI, Lakewood to be exact. Are you far from me? I have 4 providers that I see and it took many years to find them. I had to weed out so many over the years! Anyway, one of them is someone I think you should see. Her name is Dr. Linda Bluestein and she owns Wisconsin Integrative Pain Specialists in Weston (right by Wausau). She specializes in EDS and many other areas as well. She can talk to you about infusions too. She gives me Ketamine troches (dissolve under your tongue) and they work very nicely. She has all kinds of tricks up her sleeve. Please check her site out https://www.wisconsinintegrativepainspecialists.org/ Please let me know what you think and if you end up going to see her. Best of luck to you!
Terri

Wow! What a fabulous resume. I may have to move to Wisconsin.😁

Terri, 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!

@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

Hi 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

RWinny,
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

Driving kills my feet! Numbness and cramping

Wisfloj,
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

It'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