Ok, here's the report! I am very impressed with him. He is very thorough, spends a lot of time with you, he even has a personality!!! First, we discussed my headaches, he asked when they start, when they end--when I told him I ALWAYS have a headache, that I do not remember NOT having one, he got this strange look on his face. Next we talked about my memory issues, how I can't remember words, or how to spell them, or can't write a word the way a person is spelling it--he then sat down in front of me. First thing he did was ask me to open my mouth wide, and he stated my mouth is too small (first time I ever heard that one, wish I had it in writing)and my air passages are too small, asked if I snore, to which I told him I am told I breathe very heavy when sleeping, then he did all these tests with my eyes, my jaw, my facial bones, my neck, he asked about my sleep patterns. Of course, he has ordered a sleep study done, yet is positive I have sleep apnea. When I got home, I read up on sleep apnea, one symptom jumped out at me...waking with a dry throat and mouth...this has been happening to me for months now, along with the fact that I have 2 sons that have been diagnosed with sleep apnea, one with a sleep machine.

Then we did lots of neuropathy tests, the tuning test, "close your eyes and what am I doing tests", is this stronger or this, push me hard--you know, all those tests! Many, many tests that the other doc never did!!! He says I definitely have small fiber neuropathy involvement, says he is afraid that even after 8 yrs of gluten free, that I probably still have a malabsorption problems. He says that even if I am taking my vitamins religiously, and even if they are showing up in bloodwork, he wonders how well I actually am absorbing them!

He is running a celiac sprue panel (which has never been done), ordered parts of a poly-neuropathy panel 1, a stroke-lipid panel, parts of a muscle disease panel, restless leg syndrome panel (which includes many of the different vitamins)----and he ordered PT that is a heat massage therapy for 5-6 weeks, 2x's a week for my neck--says my neck is just too tight and part of the headache problem. Plus he is having an EMG w/needle done on my legs.

I told him I can deal with cellphone vibrations in my feet, I can handle burning feet, and all those other problems, that the pain is managable for now. What I want, is to know that I am doing everything I can to stop the progression! He said this is what he wanted to hear from me, and that we will try to find those answers for me. He said, "We will start with these tests and go from there!" He spent the better part of an hour with me. I have no complaints. I learned so much from him in just one appt. We also are weaning me off the Topamax, which is great, I prefer no meds if I do not need them. He says it isn't doing me any good, not if I am still having the headaches anyways.

Thank you Dr. Gudesblatt for emailing Doc John!!! Keep the faith, there are good docs out there, keep looking!!!

Deb

Deb...
good to hear you found good DR. who's aware & taking action on so many issues--from vitamins, malabsorption to small fiber involvement.
My neuro recently told me I have small fiber neuropathy. hope you'll share more ...

I empathize w/ having chronic headaches . Dx's: occipital neuralgia, cervical dystonia, and complex migraines. Hope you find someting that helps your headaches, and your other problems.

good luck w/ tests.
will be looking for your updates

I have to admit that an actual DOCTOR contacting Doc John about you sort of made me a bit suspicious at first? But it sounds like this guy in tuned into a real-life folks in pain channel! Guess We ALL will have to be careful about what we say in the future? HUMMMMM?
But for you that all is so exciting? Silly that it's exciting to finally get tested the way you SHOULD have been tested ages ago? A POX on all those lazy biased or stupid prior docs!
I have to say that I'm envious of you getting heat/massage therapy on your neck. I'd had that for a knee injury before I'd gotten PN and IT WAS WONDERFUL!!!!! Just be careful about doing/overdoing it after any session...you will feel soo good and be inclined to just GO AND DO! Don't? Take things in steps as you haven't been able to do that much up to now.
As for headaches...I don't know too much, as I don't get them often. When I do tho, I know something is wrong. Ideally things can improve here as well for both you and Pono! tho likely for different reasons?
Yes there are good docs out there. Finding them is the hard part!
Pity BobB is at 'DA Beach!' because one of his best sayings is" there have to be some docs at the bottom of the class".
I'd do a jig, but I'd probably fall over...so take a mental one?-'s -j

If the vitamins are showing up in your blood...then you are absorbing them.

But you may not be UTILIZING them.

Folic acid
B6
thiamine
B12

These require activation.
Activated forms are:
methylfolate
pyridoxal-5-phosphate
allithiamine
methylcobalamin

The Solgar company is making a DNA test to show which people are genetically failing in activating and utilizing certain vitamins in the body.

You can ask your doctor to give you RX for Metanx which has 3 of the B's in activated form. The thiamine you'd have to buy separately.

This thread has more information:
http://neurotalk.psychcentral.com/sh...ghlight=Solgar

God Bless your new doctor!!!

He sounds like a gem!!

Take care,

Melody

Hello
I lurk here a lot, don't post often. It sounds like you have found a WONDERFUL doc. May I ask what his specialty is?
Barb

My new doc is a neurologist. Someone told me he specializes in MS, yet when he emailed me, he seemed to know a lot about Celiac Disease, Vitamin B12 Deficiency with Neuropathy, then while we were talking, I definitely got the opinion that he understands malabsorption problems too. So, I thin he is a well rounded neurologist. He came highly recommended to me, and I am very happy with my first appointment, as you can tell!

I am so glad you are having a positive experience with your neurologist!

It seems like far too many of us go through so much needless anguish, additional pain, and anxiety because they cannot locate a good neurologist!

I am always thrilled for anyone when s/he finds a "keeper!"

Thanks so much for sharing the good news!

So good to hear you have a doctor who listens to you and doesnt automatically think you are nuts. I was in an auto collision four years ago and shortly thereafter developed cervical dystonia for which I receive Botox injections with so-so relief (but better than nothing). A year ago I also developed "burning" in feet, legs, arms and hands. Saw a local neurologist (who is not my movement disorder specialist as he is 2 hours away) and he
suggested I was hyperventilating...very little assessment. Saw my movement disorder specialist and told him at times my arms are burning hot but feel icy cold to touch (this has been confirmed by my husband who i am sure thought I was nuts before he actually felt them...hands, lower arms and shoulders warm, upper arms icy. Same thing happens to areas of my legs.
Anyhow this MDS said "hormones"...didnt even feel my arms. Too busy acting like a god in front of medical students. I also have fairly constant headaches. NONE of these problems before accident. Have had brain MRI, (normal brain), cervical MRI shows bulging discs and spurs, EMG and NCV which showed nothing. So here I am absolutely miserable with doctors basically ignoring me. So basically I am doing nothing...maybe someday something on a test will show up. p.s. have had all labs and no diabetes, heavy metal intoxication, magnesium deficiency, etc. Sometimes I feel if it doesnt show up on an MRI or lab test then nothing is wrong with you. I am
very discouraged! Glad some doctor is listening to you and taking you so
seriously. Best of luck to all of us!

sbvcrn, So sorry for your discouragement, and I do understand! Been there! You can only hear, "It's all in your head!" so many times! Definitely something is going on. I guess, you give a doctor so many chances, then you move on to another. My new doc came with very good references, one being a good friend. The fact that this doc took the time to email me, also helped!

He is only my 2nd neurologist, but believe me, I have seen many, many other doctors over the years, and I have heard, "It's all in your head!" way too many times!!! A few times, I even began to believe it, then I realized no one in their right mind would make themselves feel this way...and I do believe I am in my right mind! Some may question that!