I went to see the neurologist yesterday and it was not a happy experience so I feel the need to share with people who will understand.

Basically he did a physical examination and said he could find no evidence of any problems that all was normal. My blood test are normal and so are my nerve conduction tests. He said he would do a test called an Evoked Potential which I think measure the pathways of the nerves in limbs to the brain. I see from Liza Jayne website that it is also used for MS which is slightly freaking me out, not much because I don't have any of the classic MS symptoms.

Has anyone here had this test done?

When I asked about pain relief he said he would speak to my GP about this and then I was bundled out of the door. I explained to him that I had developed additional symptoms on top of the painful feet and tingling fingers i.e. bladder problem and my fizzy tongue (which I posted about a day or so ago). It was all very hurried I was with him for 15 mins tops, that what you get in the National Health Service in the UK. I am seeing my GP tomorrow so hopefully he will be able to give me more information and some pain relief that works.

Anyway although it was all a bit hurried at least he is continuing to investiage things with further tests, although I am now getting sacred about what the test will show is going on with me.

Thanks all for being here.

Lupin,
Be sure you get tested for Sjogren's Syndrome. I have a similar feeling in my tongue and I'm positive for Sjogren's. Sjogren's is an autoimmune disease and autoimmune neuropathies can cause the burning, tingling, etc. in hands as well as feet. My neuropathy covers the area from my toes to mid back and also my hands.

Sjogren's is also sometimes diagnosed as MS. The symptoms are very similiar.

Billye

Hello Lupin,
I took my wife to see her doctor a while back and while we waited for an hour I counted 6 patients go and come from the doctors office. I know liability insurance for doctors is high but with this assembly line admittance the profits ratio has to be high. As far as seeing a Neuro any longer I will spare my insurance company and just see my GP. The last visit with my GP lasted over an hour, he ended the visit encouraging me to keep searching the neuropathy forms on the internet and if I find anything interesting to try just let him know. By the way my GP and I are going trout fishing next week. He is able enought to wade the stream while I will have to sit on the bank. Not only was I fortunate enough to find a good doctor, but also a good friend. As for your bladder problem I notice a good many people with PN express having bladder discomfort, mine being complicated by having BPH. Just keep on reading and asking questions and good luck. Here in the U.S. a good many of us are on Lyrica and Tramadol for pain control.

Remember, all these tests are probably going to show 'normal limits'.
All of them!
Dx'ng PN is a whole procedure of ruling things out. There's no one test that is the litmus, with an exclamatory.....
...... A-HAH!! That's PN !
Its good that he's including a test for MS- that's par for the course. Gotta rule out as much as possible, and by method of deduction and investigative medicine, try to figure out the basic cause.
If and when that does happen, a more direct course of treatment will be possible- but the basic treatments for all of us are just about the same.
anti-seizure or anti-depressant meds and pain meds as a cocktail. Specific meds or treatments are added as more info is gathered, and dosages are modified- but we all start out with just about the same treatments. So whatever you're doing now, the docs are trying to help.

EPTests don't always show up damages right away. IF there is permanent damage it will show up later...trust me on this. I've had more of these than I'd like before my diagnosis came in.

It sounds to me as if your DOCS are really chugging along in that process of 'eliminating' other things like MS...so don't freak out on me! As BobB says, there are no magic AH-HA! moments.

I don't mean to sound uncaring, BUT, as long as you keep FEELING things, anythings...THAT is a truly GOOD thing! Even tho it hurts well BEYOND HECK! The fact that I can still feel things, altho somewhat strangely is a HOPEFUL thing to me... The pain, well, what's starts out as a 12-27 on the one-to-ten pain scale comes down after a while, you get used to it.

I'm betting that Liza Jane's worksheets kind of intimidated you...they did me at first as well. THEY ARE GOOD well, kind of roadmaps tho, in terms of whether your docs are going thru all the steps they should.. Later on they are good maps in helping you keep track of all that's been done and what-all-else could be done.

I too, wish, that every nite when I clamber into bed, that I will wake up and it's all GONE! It's not happening, so I'm gonna keep busy learning, coping and turning all those LEMONS I've got...into well-LEMONADE!

You know that test where docs take the little hammer thing to your foot and knee? I USED TO come this...close to almost poking their eyes out...I get NOTHING, Zero Zip Zilch reaction now. I'm just glad my PT is helping me cope so I'm not falling and breaking something every month. I hope I continue to remain more than lucky in the future.

Sooo, read those 'stickies' at the top, learn all the terms, read up on the quadrants that can help you zero in on what is the real PROBLEM, then zero in on what can be done. Causes? Too many to count...we are NOT hot-house, direct cause-effect animals. Deal with the issues of coping w/the pain during and after the diagnosis...other issues? Well, leave that all to the fates...

Keep asking your GP, and if they are one of the GOOD GUYS, keep asking questions, and ask for answers...there may not be any, BUT, if your doc is still a 'curious' person. They mite learn and dig up more stuff to be helpful to YOU. Never hurts to ask questions, Just don't be a know-it-all and put the doc on the spot rite off the bat. YOU have to make the DOC WANT to work for and with you! As Melody's events w/Dr Fred show, the good guys are out there...WE just have to FIND THEM!

A few gentle hugs to get you reading and on your way! - j

I cannot tell you how grateful I am that I found this forum, so many lovely people who listen, understand and then respond to my posts. Thanks you all so much. I have a lot to learns and you are all helping me on that path.

GP has given me Lyrica, starting with one 100mg per day for one week and then 200mg next week and 300mg in the third week.

The side effects for me today were extreme giddiness and feel “weird” but as they do seem to work for some people I intend to persevere with them and hope that the side effects diminish over time. In fact even though I have only taken one tablet this evening my feet and legs are not as painful as they normally would be – but maybe that's a placebo effect, whatever it is I like the feeling of not feeling lots of constant pain!

Still haveing bladder problem which I think may be related to the other PN stuff, I may post about this later to get any ideas from people here.

Thanks to all of you.
Lupin

Hi Lupin, There is one thing that really annoys me that its specialist trying to rush you out the door, i had a rheumo once that tried to do a full history , physical examination in about 5 minutes and then held the door open and said " ok, i will send my report to your GP " , i sat back down and said " mate, you haven't even asked me if i have any questions ", he looked at me really annoyed, and asked " what was is your question ? " I said, well can you tell me what you think is going on ? he said " NOTHING, i can't find anything wrong with you except of some arthritis in one foot, thats what it probably is, I said " your bloody joking mate aren't you, when does arthritis burn like this in both feet not just one foot ?, he said, " i really don't know whats wrong with you, i have never come across anything like this before ", i said ok, then what tests are you recommending for me ? he said " none ",[ by this time he was going red with frustration and getting real sharp with his answers], i said then, aren't you going to refer me to someone else, seeing you can't work it
out " he " NO i am not ", and then gets up and opens the door again and says i will send my findings to your GP " i said " what findings you haven't found anything to inform him with " [ by this time his face was nearly purple and his eyes were sticking out his head like a mad man ] so i continued to pressure him with more questions
I said " why don't you send me to a neuro for a complete evaluation for perhaps PN, ? [ I had a Nerve conduction test done previously] and i asked him about that, he said " LOOK MAN , a neuro has already done a Nerve Conuction test and found that there is nothing wrong with you, his findings said you show no signs of PN " and he got up again and opened the door, i said " hang on mate not so fast, can a nerve conduction test for small nerve damage ?, and seeing my problem is burning feet, isn't that small nerve related "
Well you should have seen his face, i will never forget it he buried his head and he said very softly " yes i can be ", so i said ok, looks like were getting some were now, [ by this time, he was nearly having a heart attack ]
Then i said what about possibilities like, Vasculitis or Systemic Lupus Erythematosus seeing i have got some numbness in my feet ? he looked at me like this , then he changed his tune all together, and said " ok then, i will mention all of this to your GP, he is a very good doctor and i will leave it up to him to do all the appropriate reffering, etc, ok my friend ?
I knew this was the end, he wasn't prepared to do a dame thing to try to help me, so i got up off the chair and said well hasn't this been a waste of my time ? and walked out the door, i looked at my watch and it was only 20 minutes all up.
The next appointment i had with my GP, he read his report and said he couldn't find anything wrong with me and no other referals were recommended by him.
Unfortunately there are some really useless specialists all around the globe that don't really care about their patients at all, they are to concerned about how much money they can make in an hour.

I am sure there are plenty of others here that have similar experiences with specialists, but i will never leave any doctors room unless i feel satisfied myself, no matter how much they try to push you out the door, if the shoe was on the other foot you could imaging what they would be doing.

I am not saying anything bad about your neuro, all testing does takes time, but the more you help yourself by learning ,searching for answers, either from the " stickies " here or goggling up PN symptoms on the net, or look at Liza's charts and checkout if your symptoms match on the net, having questions prepared & ready for your next neuro visit, the better it is for you in the long run, if it wasn't for some of the vets here on this board pointing me in the right direction i wouldn't be anywhere near as repaired as i am now.

good luck
Brian

Oh my goodness, Brian, you poor thing. The doctors you have seen. They should just hang their heads in shame.

I will hug Dr. Fred the next time I see him.

All the best,

Melody

Yeah Mel, i have struck some real beauties alright since the onset of my PN and i would bet that there are many more on this board that have a few stories to tell as well.
It seems they don't like it when you stand up for yourself either, these clowns have a cheek to call themselves " Professionals ", but on the other hand there are many good ones & good ones out way the bad ones by far.
My Neurologist who is a real pro, an associate professor of Neurology and is a PN specialist, this guy is one the most nicest & sincere people i have ever met.
Dr Fred sounds like he's one of the good ones too, and there are plenty of other real good doctors around as well, its just some idiots that are in the wrong profession, thats all.
I hope you & Al are going along ok

all the best
Brian

any relief you're getting is a placebo effect or real. Any relief is good stuff in my book. Because STRESS aggravates our condition, don't worry about it, as PN if rampant IS one heck of a scary issue....definitely causing stress.
You and your docs should work together on balancing your lyrica doses, with all the s/e's and your pain relief. I would, if I were you, just call the doc's office and ask if the giddiness is NORMAL or not...just to be safe. A phone call can be pretty cheap caution.
I hope others who are on Lyrica can chip in on this aspect, But I can attest that I've had strange s/e's with other meds and stopped right away [after one dose only tho] to be later OK'ed w/the doc that stopping was the right thing to do.
As for evoked potentials, I think that this site: http://www.brainandspine.org.uk/info...is_evoked.html WHEW! It's just one of the many, many tests that's used to rule out things such as MS so if there's no problem, YOUR problem has one less condition to worry about, and one more test checked off the 'Testing' lists. You ARE getting to your diagnosis....you'll just have to learn this whole new 'vocabulary' about what you have and what can be done about it. It's not easy, but the more you know, the better you can deal with it all.
Super good thoughts! - j