I don't know what I'd do without this forum. I'm not finding actual CARE providers...you know, someone who will work with you and at least pretends to care if you're feeling better. The neurologist I've seen twice has essentially said - oh, it hurts much worse? Ok. Well. Do you want a follow up appointment in 3-4 months?

All I want to do is scream why would I bother coming back here when you don't do anything for me.

Also, he had my test results for 4 months and said, "did I send you to a rheumatologist?" Again, my brain said, "if you had, would I even be here?!" but my mouth politely indicated that no, he hadn't.

He thought maybe since my ANA was positive, I should see one. I had asked that question when I got the test results and he said he wanted to repeat the test first. When I reminded him of that, he said, well - if the results to the follow-up test were positive again, he wouldn't know what to do next, so I should go straight to the rheumdoc.

Done venting now. My question - yesterday the weather changed from nice to rainy and my pain was much higher. Is that a somewhat "normal" SFN issue or does that seem to indicate that maybe it is something a rheumdoc would treat?

Thoughts? or if you'd like to do your own venting about uncaring docs,, please feel free

I'm sorry you are going through this. My experience with most doctors has taught me not to count on them for much except being guardians of records. Even in that role I have learned to get a copy of all my tests whenever possible. I have finally figured out how to deal with them in the most advantageous way possible since I need them to order test, etc.

I am effected by changes in the weather including rain. I believe for me it is the humidity. I have seen other posters indicate change of temperature especially extremes are a problem. I wouldn't think it is out of the realm of possibility that your symptoms could worsen from this. It would be something you could ask your new doctor but I'm not sure what you'd be told.


pinkynose

The weather here is crushing me- it was 60 and Sunny Sunday (ok) high 30s and raining Monday (ugly). The last few days have been damp and cold and I have had flaring accordingly.

SFN not yet confirmed by biopsy(incoming May) but my neurologist assures me that along with my confirmed long fiber neuropathy I present SFN.

I know others have issues too, though commonality, I'm unsure.

It is hard to find a caring neurologist. But one can understand that it would be very difficult having to work every day with people that are suffering very badly and many times there is very little you can do to help them. Certainly no excuse, but it does take a special kind of person to be able to care for people with such challenging conditions and still maintain their empathy.

As for the weather - yes, weather changes seem to affect many of us with PM. Atmospheric pressure drops seem to have the worst effect, followed by temperature changes.

I can tell when the bad weather is coming and it's miserable.

Along with the SFN I also have osteoarthritis. So it's a double whammy.

My neuro was pretty useless but he did go through the regular 3 meds for SFN and we found that 1,800 mg of gabapentin a day was helpful. He doesn't treat pain as he feels pain meds do not help with SFN. Boy was he wrong. He finally said my only option was PM. My PCP and foot/ankle dr said the same thing.

I've been going to a PM for a year and a half now. My ANA was negative.

Hope you find some relief fast !

Debi from Georgia

It's raining again, so I hurt bad today and need to keep this short, but wanted to say I went to a major teaching hospital (Univ of KS hosp) and was assigned to a neurologist who cares and is willing to treat me!

She explained my symptoms present as one of 3 things (or combinations) - auto-immune, autonomic and CRPS. She is testing for the first 2. CRPS will most likely be a diagnosis of exclusion. I've posted elsewhere that I am terrified of the EMG/NC test, but b/c she invites a team approach, I have agreed to undergo 3 of them at the end of May (is there an emoji for terrified?)

There was a very recent thread regarding people's views regarding the EMG/NCS testing. You may want to read it.

Loved your comment about the "terrified" emoji.

I think, for me, the WORST part of the testing was the unknown. Once I had done it, I found it was nothing like I expected, but MUCH easier and a LOT less painful than my anticipation.

Regarding the first post of your thread, "falling through the cracks" seems to happen more often than we would like to believe. I have heard those exact words, did they send me to ........... I, too, like you just said NO instead of what you and I both thought.

One of my docs always tells his patients to call HIM, not the other way around, for test results for that very reason. If the patient is forced to be proactive, then the doc is not responsible for the "falling through the cracks", as he gets reminded by the call from the patient. Personally, I do NOT like to place a call to the doc, but if that is how he gets my results to me, then, that is what I do.

Forgot to mention in my earlier post. I had an ANA come back positive and I was immediately sent to a rheumatologist. I had some other telltale symptoms of what appeared to be lupus. He concluded it was a false positive but a positive test should be investigated further. No one ever suggested the test be repeated. It was a direct referral to a rheumatologist.

Not funny, but sometimes, docs can make some really dumb remarks. You sure gave a prime example. (And some other good ones, too.)

Loved that you chose such great "emoji" symbols to match your post. They were perfect.

I had to switch primary care physicians because of a change in insurance, and had my new patient appointment a couple of weeks ago. My neuropathy got little more than a "hmm" out of her. No sign of concern, no questions asked.

We would end up spending more time talking about the MedStar ransomware problem because she's part of MedStar and I have a data security background.

Got charged $198 for the visit.