Update on Neuro app today
 

Just an update:so I went to see the neurologist today and I can not beileve a medical professional cam be so rude..This was appointment I was waiting for as it's suppose to be the top hospital for neurolgy in the UK.After being called in by the Neuro we went over previous test results and he asked about my symptoms he than done the normal Neuro stuff they do in the office with pins which by the way a 5 year old can also do,anyway after going through everything he said"what do you want me to do,you have had all the tests done and nothing was found ther is nothing neurological wrong with you"I told him his the speicialst and I think I might have SFN as all my tests are normal."he said tough luck not much I can do with that,if u do have that u will need to manage it as there is no treatment for SFN,but I don't think you have this and it will level out over many months"when i asked him what might casue these symptoms he said Anxitey!!i said for 6 months im in pain my body twitches all over he said anxitey does funny things,I honestly could have punched him I told him to refer me to another doctor who specialise in PN he refused.Long story short i could not believe it I walked out so disappointed,not sure what I can do now as I have now been discharged.

Many of us here are in the same boat. If they can't find the cause, they can't treat it.

In the past four-and-a-half years, I've had six MRIs, countless rounds of bloodwork, a spinal tap, and most recently, an EMG and a nerve conduction study. All were normal except for the brain MRI that shows a spot the doctors can only shrug at. No cause, no treatment.

Anxiety and worry will definitely make the problem ten times worse. It's not the cause, but it's making you more miserable. You're not unlike most of us who completely freaked out when we first developed the condition. Our anxiety levels went through the roof. Do whatever you can to try to calm yourself down. I promise you it will help. The less cortisol, adrenaline and noradrenaline you have in your system, the happier your nerves will be.

I'm 4 1/2 years into this and feel better than when it first hit me.

The only time I ever saw any type of specialst before was when I broke my leg...he was terrific and I honestly thought all specialst wer like him,how naive was I!!..im not sure what I can do now,apart from just getting on with it.like I've said this all started one evening after having a shower I than came down with tingling/itchy symptpms than the nerve pain..maybe my immune system had some sort of reaction it did feel like it at the time and now it will take time for nerves to heal or is this wishful thinking

Yes, nerves can recover. Do everything you can to give them a chance. Eat a healthy diet...low sugar, low processed food, watch alcohol intake, ample omega 3s. Exercise to increase blood flow. If you smoke, stop. All the usual stuff.

When mine first started, I had the horrible zapping nerve pain in my legs and feet. I rarely have that now, so something has helped.

That's the only type of pain I have is the prickly/stinging in the hands...if you don't mind me asking what type of pain do u have now..i don't have the burning

My signature pretty much covers it: Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

The other thing with me is that adequate hydration is REALLY important. I think my problems in the morning are caused by not having been drinking water during the night.

I know just how you feel.
 

My regular neurologist and I basically fired each other. He was the most arrogant doctor I had ever met. I think some of his problem is his frustrated because there is so little really known or understood about the nerves, especially small fiber ones and he doesn't have the answer. They all seem to do the same basic tests and if you test negative in an area then insurance will not cover you to pursue that area. They seem to need people to fit a a very small box of possibilities and if you don't fit then so sorry...Next.

I have a short story that now, after 3 years I can finally laugh at. I made an appointment with the head of neurology at the best teaching hospital in my city. I checked out reviews on the doctor and everyone seemed to love him. I prepared for weeks all my tests, notes, questions, etc. He was one of the nicest doctors I'd ever met BUT he didn't look at my tests or notes. Instead he insisted he do his own pin prick tests they all do and at the end he proclaimed my entire problem came from me crossing my legs. He assured me that if I stop that habit the burning would stop. I left his office thinking what a wonderful, easy solution until I realized that was the biggest bunch of nonsense I'd ever been told. I was so very disappointed. Of course crossing your legs is not a good idea for circulation but it had nothing to do with the cause of my sfn.

Not crossing your legs? Good grief, that's a new one....wow!:eek:

After my own "not happy" scene at my neurologist 4 years ago, I have been looking for another somewhere near East Tennessee.....nuttin...nada. Then I read here and on other PN forums the horror stories the rest of you have experienced. It's down right depressing I tell ya.

So, like most of us, I'm stuck spinning my wheels and gathering information on my own. I am curious about one thing, how much more prevalent is Idiopathic PN now than say 50 years ago?

:eek:

This is one of those cases where I think you should be able to ask for refund due to a defective product. Oy vey.

My neuro has no answers or clues, but freely admits it at least.

How do you get over the anxiety part? I am only a month in and it absolutely depresses me, I haven't found out whats wrong yet.. and everytime I get a symptom I just want to cry. I feel like I just want to dig myself in a hole!