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Has anyone experienced internal vibrations?

Brain & Nervous System | Last Active: 3 days ago | Replies (888)

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@maggie1960

Her idea of going over existing test results is posting them for access through the patient portal. When I messaged her through the portal about answering questions her nurse replied for her, saying she, the nurse, had called me the morning after the test results were posted to ask if I had any questions. I hate to call anyone an out and out liar but I never received the phone call, and there was no voicemail message from the nurse. The most the doctor did was to write a couple of little notes out to the side of a couple of things that were out of range saying I could discuss them with my primary care physician. Obviously she did not think it important enough to discuss with me, or that there was no relation in the test results to neuropathy. My primary care physician has been out of the office for two weeks and I won't be able to see him until Sept 2. I am scheduled to have a nerve conduction study on Sept 1.
However, I may delay that since I am in the process of finding a new neurologist. The referral for the one I want to see should be processed by tomorrow. He's very hard to get in to see so it may be awhile before I can get an appt. However, my follow up with the current neurologist isn't until Nov. 17th, so I probably will be able to see him before she wants to see me again. At this point I'm not even sure why she want to see me again since she has no comment on test results and won't answer questions.
I've been on gabapentin at 300 mg 3 x a day for about 10 days, as prescribed by her, with no relief whatsoever. I know it takes time for it to kick in, but I just didn't realize how long. I messaged her today to ask and she said it takes 4-6 weeks. My pain is worse on some days than others, but particularly bad at night. I asked her what can be done for pain while I'm waiting over the next few weeks for gabapentin to "kick in". Her answer was to take tylenol or ibuprofen, and other than that there were no alternatives. I told her that those two medications don't make a dent in the pain when it is at it's worst, and that it was a sad state of affairs that the medical profession could not do better to alleviate someone's pain. She had no reply to that which did not surprise me. I guess you can tell I am more than frustrated. A friend of mine jokingly said, well if nothing else helps just have a martini. Good thing I'm not a big drinker.

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Replies to "Her idea of going over existing test results is posting them for access through the patient..."

@maggie1960 Ah, yes, the portal. It comes with good, it comes with not so good communication. Posting results are great, but I agree, it does lack personal connection, especially when patients are emotionally invested in their health and may have fear and/or anxiety over the unknown. It's unfortunate about the missed call. The good news is that what they've found so far is not worthy of emergency and it sounds like they are willing to discuss if you called back the nurse. Maybe it's not worth it as you are leaving that practice.

What I found was that most of my doctors (except my PCP which I was lucky to have, he's since retired) were focused on providing the facts and not so much bedside manor by relating to the patient's concern and worry. I was guilty of major worrying which added to symptoms and did me no good. It's difficult though and I do understand the frustration of finding a neurologist you like and connect with. Unfortunately, the waiting lists are inevitable. Might you request being put on a waiting list? Or check in daily to remind them that you are very interested in being seen earlier? Sometimes chatting it up with a nurse and building a rapport helps lead the way and gets your name and situation on the forefront.

As for pain, I'm sorry you're in so much. Gabapentin is a work in progress and can continue to be increased based on results, but does take time and patience. I was in your position with neuropathy where nothing helped the pain. What I can tell you from experience is that nerve medication is an important line of defense but is not end all. Extra Strength Tylenol may be able to pitch in a bit but honestly, some of your key components to pain management are continuing to be physically active as best you can, emotional and behavioral therapies to help you deal with your new conflicted feeling during this process, sleep hygiene and healthy eating habits, etc. I hate to say your doctor was right, but with neuropathy, there is no magical medication and quick fix and that's a tough pill to swallow. No pun intended. I wish I had learned the importance of self-management tools sooner.

You've got a lot changing and going on...give yourself grace along the way. What types of distraction do you have that can help take your mind off of pain? Do you have any hobbies that you enjoy?