This is great news Stacy! I hope you continue to show improvement after all your suffering these past weeks-fingers crossed. I also hope that your appointment with the neurologist this week goes well for you.

This morning I took another pill, first time in months to take it two days in a row but I want to see what happens. Yesterday was good, hardly no fan but I still cant be up on them a lot. My night was better too, although, yes I still had to use water bucket, I sleep one hour wake up to swollen, huge painful flare, soak for 15 minutes and try to sleep another hour and the cycle goes until morning.

But last night was better because I could soak then no pain. Before even though I would soak, I would force my foot out of the water and it would still hurt, less swollen and less pain, but still hurt. Last night not so, last night the soak would take away the painful swell then no pain and back to sleep. So yes the night is still long and hard but easier than before.

Today is day 2 and again, doing better, no fan, no pain, good as long as I stay off them. Getting showered, hair and face done is like a track across the word, I am exhausted by the time I am done.

I am going to see a movie with hubby in an hour, hopefully all will be well. I need out of this house.

Blessings all.

I hope the movie was fun!

Getting out the house will probably do you a world of good, and will be worth the exhausting efforts to get ready. I hope that all went well and you enjoyed the movie.

Today was my neuro dr appointement. It was as useless as I suspected it would be.

She refused to even CONSIDER that I had EM and just said neuropathy. Then basically said we will test but end result is no cure just pain meds. She ordered blood tests from her lab and then ordered another set of blood tests that can only be done at one lab in the US and it has to be approved by my insurance before I can do it. Apparently it is very expensive. I tried asking several times what tests she was running and she intentionally was vague. I think it has something to do with auto immune but I dont know.

She said if my insurance approves the test they will send me a kit ??? then i take the kit to a specific lab to be drawn??? I dunno. If I ever hear from my insurance for it I plan to find out what specifically it is for since its soooo expensive.

Oh, and I got the drug garbatin/neurotin?? yeah.

Not any better off today than before I went. I want to find a doctor who will check/treat EM.

There is absolutely NO reason that you are not told what labs are being run!! That is absurd! When you go to the lab, I would ask for a copy of the order.

The neurontin is a very common starter drug for PN...and worth giving a try.

I know very little about EM, other then it's rare and difficult to diagnose. Did you have the pronounced redness/swelling at today's visit? If not, and it's something that occurs periodically, then make sure to take pictures to your next visit.

I don't know if you have many options for selecting neuros in your area (and on your insurance), but going with someone that comes from a recommendation is best. Do you know anyone locally that has seen a good neuro that could give you his/her name?

You may be one of the many that have some relief from Neurontin...I hope so. Keep us posted on your trial with it. Keep in mind it takes a little time to work up (slowly) to the right dose.

I agree, I should have been able to know exactly what tests were being done. I confess I was a bit of a mess and not my usual strong self. It was apparent from the onset that she was not open to anything and seemed to have a course of action from the beginning regardless what I said. Knowing that right away dashed any hope I had of her being a doctor that would listen, be open, and work with me. She had decided pain meds and blood tests and that was it.

She took a dislike to me almost instantly JUST FROM READING MY CHART. Even hubby agreed. She read my chart and asked why did you switch from the initial dr that diagnosed you with thyroid problems? I said because she would not prescribe NDT meds only synthetics. That ticked her off, I am not joking. I could see it in her eyes.

Then she read all the "natural" things I take, supplements, etc. and without even ASKING me a single thing she says...if you are against western medicine there is very little I can do for you. Swear to God I had not even spoken at that point other than past medical stuff. I said I wouldn't be hear if I were not desperate and ready to try.

Then later, she says ok so the only medication you are on is hyroclorthiazide? I said no, I am on naturthroid. She says I am talking perscription mediction. I said naturetrhoid IS PERSCRIPTION. It can not be obtained without one. That clearly showed me she was ticked for reasons I can not describe. She made a judgement about me and does not like people who treat themself naturally.

I felt defeated before it even began and lost hope. I didn't even tell her or ask her most of what I wanted to, hardly anything at all. I took the stupid womans attitude and let it defeat me. Once again, another doctor, intimidating, superior, attitude, made me feel insecure and kept me from having a voice.

Been there done that. Never thought I would allow it again but there I sat, taking the hits, and that is what it felt like, and because I was so emotionally strained, I let it happen.

I took the stupid pill last night, and don't get me wrong, I get it, I need pain meds, but what I wanted was a doctor who cared to dig into my situation to find the root cause and work with me and be open to things.

So I took the pill. Took it at 10pm slept til 3am. First time in a month to sleep 5 consecutive hours. At 3 the pain part wore off and woke to huge, inflamed, swollen, red foot. Limped to the couch and used water, but the sleepy part of the pill was still in affect and I fell asleep with my foot in the water...not good. No ice, just water. Went to sleep again on the couch. Sleepy affect lasted until almost 11am. All in all it was a good night, wonderful relief for 5 hours.

I will not take this every night, I am so fearful of the chemical addiction and having to up it constantly. I dont want to sound like a lunatic against medication, I am not. But if I live 50 more years, even 40, I have a long time to go and plenty of time to get hooked on all the medicines, might as well take my time getting there.

I want answers, I no a cure may never come, but I want a doctor who at least knows what EM is and is willing to read the dang material and consider it. I want a doctor will to try things. Or care. Or at least not hate me.

Sounds like you need to research and find a doctor more open to at least 'looking' at possible causes as well as a natural approach that can work in conjunction with western medicine. It can take a while to find a good neuro. I don't know of anyone that had that perfect match on the first go. As I said in another post, they are a rare breed and can be quite arrogant IMO. Not all of them, of course, but many.

I don't believe Neurontin will be very effective as an 'as needed' medicine (other then for the sleeping effect). It's meant to be taken regularly. And it usually has to be 'upped' initially just to get to the appropriate dose. Many can stay at that dose for quite some time, but others find that it eventually doesn't work after a while (but that can be years). I took it for about 4 years before I maxed out on dose and it wasn't effective any more. It wasn't difficult to taper off either. It's really an individual thing...as in all medicines are. Some have good results, while others don't.

I understand your anxiety about medicating for 40-50 years (I gave that much thought myself before starting to take pain meds)...but your PN will likely be there for 40-50 years , and I'd hate to see you give up treating it effectively NOW for the sake of future doses...when you may have the very same symptoms (or progressively worse) down the road. You'll never get back the time you missed now (possible pain free) if you chose not to treat it effectively. Again, just my opinion.

Talk to people and med centers about the neuros in your area. Do some research about them and try again. You're worth it.

And take pictures of your red swollen feet when that occurs. It's a very effective tool to take with you to appts.

Yes, it may just take a while to find the doctor that works with you. So glad you got some sleep.

don't let one high and mighty doctor defeat you. I have had that happen to me also. My first neurologist wouldn't listen, and I actually waved bye bye and walked out with him still talking!!!!!!!!! I had had it at that point and I was not willing to listen to his attitude. His surgery on me failed, and he was not willing to listen to that. So....down the road, I had to have it done over again with 5 other vertebra. If he was so right, how come I had to have it done over again???????? Just goes to show you...Keep on trucking until you find that doctor who has compassion and is willing to listen!!!!!! The good ones are out there, and it takes some effort to find the best. ginnie