Changing doctors …

Ed - I can’t believe the angel of a Neurologist I was led to yesterday. He was absolutely the best I ever encountered on all facets of knowledge, mannerisms, and compassion. He is part of a large Neurological practice, not a regular hospital or a medical university hospital system. Since I am not a person to be cured or of special interest to those corporate groups, I wasn’t concerned about partnering with this doctor for my hammertoe surgery concern for a person with Neuropathy.
I left feeling absolutely refreshed in how he was engaged and how we got it done in 15 minutes while he did the routine reflex, strength, tingling and pin prick stuff. He very professionally acknowledged that he knew I had the medical university doctor but if I wanted to follow up with him again, that would be ok, especially if I felt I needed follow up or therapy arranged after surgery if I decide to do it. On the way out, the receptionist asked if I wanted to schedule again and if so, if I wanted 4 months or 6. I chose 6, knowing it’s the same time I have my medical university appointment.
I think it’s a no-brainer what I’ll do, the bonus is that this guy’s office is only 10 miles from me. If I get hospitalized for my PN, it will be because I fell or can no longer walk and in transition to convalescent care. I won’t see “my” doctor, nor could she help. I am not a research interest, her research and the courses she teaches are in ALS; this university hospital doesn’t have studies on PN right now. Not to mention the lack of compassion and awful rudeness of this other doctor. I normally would promote the medical university system- I absolutely revere the Cardiology group and will not leave! But I’ve accepted that there’s no mutual benefit of a PN relationship with them at this time.
I have 6 months to think the Neurologist choice as I’m separately contemplating the hammertoe surgery, but I have never felt so energized after my Neurology appointment yesterday, and it’s such a good feeling! As I “Keep Moving” today, I might just add an extra lb to my hand weights in this morning’s Tone & Balance class. Ed - I want to thank you for all you’ve done to help keep me motivated and focused on taking charge of my quality of life. I am so grateful. Deb

...In this sleepy Midwest town there's just no place for Neuropathy Blues.

Sent a message to Dr. 'A'. He told me to see Dr. 'B'. Saw Dr. 'B'. He told me to see Dr. 'A'. When I grow up I want to be a neurologist so I can make 250K a year telling my patients to see somebody else. Maybe a Pain (ITA) Clinic doctor who makes 350K a year to tell me to see somebody else. Don't know this guy 'Somebody Else'. My doctors are all telling me to go away, so maybe he's at this place called 'Away'. I think it might be out West somewhere. Maybe Nebraska?

@dbeshears1 - Wow...sounds like you lucked out..finally! And, you deserve it. You always had a "drive" to get things done, easy to spot that in your posts. And, you don't need to thank me Deb, you kept being persistent until you connected with a doctor who had the qualities that you need and respect. That is so important. And, 10 miles away is fantastic. Glad you're doing better and keep moving!! Ed

Hyperesthesia anyone? It has been worsening over the last few months. It is now severe, head to toe. it has become extreme at times. I cannot touch anything. I cannot touch my own hide. I cannot touch my feet to the floor. Until recently, I was wearing as much clothing as I could to try to insulate myself, but that doesn't work anymore. Now, I have to minimize my clothing because my hyperesthesia is too severe.

Hi, I can’t remember if you are on seizure medications for your neuropathy? And antidepressants to calm your nerve sensitivity? Muscle relaxants - doesn’t sound like they would make sense, but they also calm down wayward nerves. What are you taking?

I’m like that off and on. Fabrics feel different on me. Weight of clothing affects me. My feet need socks at times and other times I feel like I need to rip off my socks as fast as I can, like my feet feel smothered. Legs start feeling so hot I have to roll pants up or take them off. Then it goes away until the next time. Now I’m having problems with weight on me when I go to bed. Wind up throwing spread off then sheet off then back on again etc. Don’t know if I have that problem but that’s how I feel. I just deal with it and try to get my mind off it. If you find something let me know. I feel for you having it all over all the time

Hello!

I'm the perp who started this thread, Changing Doctors. As I just completed making that change this morning, I thought I should report that the change went well. I'm not ending my association with the neurologist I've been seeing for the past two years; I'll continue to keep him abreast of how things are going (he's a good doctor; I like him, but his practice has grown so large that I've had increasing difficulty either seeing him or getting answers to questions). I'm simply refocusing, returning to the neurology team with whom I'd originally worked. The conversation I had this morning ended just as I'd hoped it would: new blood work (esp. to look at my B6 level), a second EMG (the last – which was my first – was two years ago) to see if my PN is progressing, stable, or (highly unlikely) retreating, and a host of et ceteras. I try ti make it clear to the neurology team that I've long since accepted that my PN is incurable. I wanted them to know I wasn't returning to them hoping for a miracle cure. I believe I said I simply want a go-to neurological team to whom I can turn if & when I've questions or need help. I said, too, that I don't change doctors lightly. I regard changing doctors as serious business. If I hadn't had a good reason, I wouldn't be doing it.

Ray (@ray66)

I have follow-up blood work in December and will wait for the results, however, my plan is to find a new primary care doctor, and maybe a new neurologist once I have the results. I want to find someone that listens, and instead of "I don't have an answer for you", someone with a little empathy and curiosity towards the problem. I don't change doctors lightly, but I think it is time.

Good luck to you. The medical world is in a bit of a mess and change can be scary. I miss the days when doctor offices had someone on duty 24/7. Now it's "go to the ER" if you have any issue after 5 pm.