Hi all.

What an interesting day. We went to see Dr. Goldfarb. She is a specialist in Peripheral Neuropathy. When we first got there, I had all films, copies of all of Alan's reports (MRI's, previous EMG's, reports from this doctor and that doctor, etc.) and most important, I had Liza Jane's charts which had been filled in and updated. I was curious as to how Dr. Goldfarb would react to me coming in and showing her the charts. I had never done this before.

Well, surprise, surprise. She was very happy. She told me "wow, you have certainly done your work and research haven't you. This is an excellent job"!!!

She loved the charts. She said "this is so thorough, it's great". (So kudos again to Liza Jane)

I was thrilled. I didn't want to hit her with the suggestion of tests that Alan should have yet. I wanted to hear her out first, (to get the feel of her as a doctor).

She couldn't have been more thorough or nice to Alan. She brought us over to a wall and showed us images of axonal and fibres, and myelin sheath. (and everything). Didn't really understand everything but I got the jist of it.
She looked at all the papers (all of Alan's records) and this is what she said:

"Okay, I will examine Alan today, I will schedule him for an EMG, which I will do myself (I'm thrilled about that). I want to go over each and every report and test that you have just given me. (About 80 pages or so).

Then, after Alan has the emg, I will decide which tests to do!!"

That's when I said "on Wednesday, Alan is scheduled for an arterial duplex and the doctor will run a test for vasculitis." She said "terrific". Alan then told her "Dr. Fred wants to work with you, he wants to know what tests I should get and he will order them"

Seemed like a perfect opportunity to show her the tests that Liza Jane suggested. I politely explained that I knew someone who has neuropathy and who has charts and suggestions of tests. Is it okay if I show these to her?" and I whipped out the Athena Tests and she said "oh, I know all about Athena, and here's my own Neuropathy Test Page Chart." Had the same tests on them.

So she does know her stuff. She then said to me "we have to see if Alan's insurance will cover the Athena tests because sometimes insurance doesn't cover them.". "We have to check into that" So I said "so you don't want to run any blood tests until he gest the Emg?" and she said "yes, that's how I do things here. I want to see his emg, I want to look over every report and all his films. I want to check for axonal and demyelinating neuropathy". I understood completely. ALAN GETS HIS EMG ON DECEMBER 13.

Then she took a complete family history. Everything about his father, his mother, his sister. Their health. everything. Then she started the examination.

Besides the tuning fork thing and the reflex thing, she checked his muscles, his strength, his balance, she did a complete neurological exam.

Then she went to his feet and did the "can you tell me if this toe is going forward or backward?, thing. She kept going hmm hmm.

Then she told him to take off his socks. ALAN DOES NOT LIKE TO TAKE OFF HIS SOCKS AND GO ON BARE FLOORS ANYWHERE!!!

She explains "Alan, I have to see how your feet are on the floor, I have to see you walk and do things". So he complied.

She watches him walk, (all good). She told him to hop on one foot (he couldn't), she told him to skip, (he couldn't) she told him to walk on his tippy toes, (good), she told him to walk on his heels (good). Then she told him to get down on one knee and get up all by himself without holding on to anything. He did absolutely fine she said (both knees). She said he is very strong and he did very well in that department. He told her he goes to the gym three days a week and she said "that's great".

Then we told her about Dr. Theirl and what he has done for Alan. That before Dr. Theirl he was on Fentanyl patch and after, Dr. Theirl, well, it was a whole new ball game but Alan still has PN between his toes.

Well, after the examination this is what she says "I know Dr. Elowitz, and I respect him" (She also mentioned the guy she trained under but my memory is not good today and I can't remember the guy's name). I understand that Dr. Elowitz doesn't think it's his back, but his PN might have a little to do with his back and a little to do with something else. We also have to check for auto-immune". We have a lot of work ahead of us." I then asked her if she thought it was small fiber and she said "yes, I believe it is".

She said if, after all tests are done, and if she is convinced that it might be attributed to his back, she'll send him to someone she knows but it might just be 50/50. For now, we have to start with the EMG. That's the most important thing.

Alan was very comfortable with her. She answered all of our questions. She made complete copies of everything and as we left she said "I have a lot of reading ahead of me tonight, I am going to familiarize myself with Alan's past, and present". She didn't BLOW US OFF, if you get my drift.

THEN!!! she said "Alan, I'm going to give you a free prescription for one week of Lyrica. The lowest dose. Take one in the morning and one at night."

So as of tomorrow morning, Alan will begin his Lyrica.

We were her last appointment and she said "I can take all my time with you".

So all in all, it was a good appointment. He was examined, he got his lyrica, and his emg is in December. They had nothing open sooner than that.

She held the films because she wants to take her time and look at them and read all reports.

I'd love to hear what you all think of his day!!

Melody

I am very gratified that she reacted well to the charts. Once again, to anyone who reads this page---no one has yet had a bad experience with a doctor because of using the lizajane charts. Now this isn't a dare--I'm sure there will be some doctors who feel threatened, but basically, no one who is decent will feel this way.

So please, anyone reading this, take it as encouragement that the charts are helpful.

Melody,
She sounds like the kind of doctor I'd like to have. She's not jumping to any conclusions and it sounds like she is prepared to take her time with reading, studying and testing. Hopefully when she is finished, she'll have some answers for you.

Oh..Be sure Alan eats when he takes the Lyrica. It makes me horribly sleepy if I have to take it on an empty stomach. Also, let him know that I couldn't take Neurontin. It made me brain dead (moreso than I am naturally). It also made me horribly dizzy or spacy. Lyrica hasn't had that effect on me. I hope she started him on a low dose. Starting low and gradually increasing is the only way to go with this type of med.

Good luck. I'll be following the happenings.

Billye

Alan is starting on the 75 of the Lyrica (whenever he does, because the pharmacist didn't give him the insert and he didn't talk to the pharmacist because I got the pills for him).

So when Alan is comfortable to take them, he will take them.

Will let you all know how he does on it. he is very careful since the celebrex incident.

bye for now,
Melody

Billye took the words right out of my mouth - I wish I could find a doctor like her where I live!

So glad to hear that everything went so smoothly today. I hope that Alan reacts positively to the Lyrica - as I have said before, it has done wonders for me. Believe me, it is not a 100% cure-all. I still take Tramadol and use Lidoderm patches, 1/2 on top of each foot if I am going to be on my feet for any great length of time. I do not have any of the side effects that others have talked about.

We are all so different in the way out bodies react to medicines - it just really amazes me. Will look forward to your updates in the coming days, Melanie.

Diana

how rare is THAT? LOL

You'll have to keep us up to date on this intervention. I am sure you will!

Of course I will continue to keep you guys updated. We're all on a journey here together.

Just woke up. It's 8:13 a.m. and there's a police helipcopter hovering over my neighborhood. Been doing this for two days. I MUST FIND OUT WHO THE'RE LOOKING FOR!!!

Alan is being very cautious about the lyrica. Not only did he have the bad experience from the celebrex but he will never forget about the Neurontin (made him deathly sick).

Oh, I have a big important question about Alan's PN.

As I indicated previously, Alan's mom had Guilliam Barre Syndrome when was 45. Affected her legs and she had to be hospitalized, go into rehabilitation and learned to walk.

We have told each and every doctor about his mom and each and every doctor has pooh-poohed any connection from his mother to his PN.

Yesterday, when I told Dr. Goldfarb, she didn't pooh pooh it but she just stood there going hmm hmm and then said "But Guilliam Barre is .....and I blurted out 'IT'S ACQUIRED, SO YOU DON'T THINK ALAN GOT IT FROM HER, RIGHT".? And she said "exactly".

NOW LISTEN TO THIS!!
Alan was on the internet last night (he is, for some reason, convinced that his PN is connected to Guilliam Barre is some way or other).

He found some information. I'm going to type some of it here and hope that some of you knowledgeable people out there will peruse it and give me some of your thoughts.

---------------------------------------------------------------------
GUILLIAN-BARRE SYNDROME AND ITS VARIANTS
Guillian Barre Syndrome most commonly characterized by some comination of limb paresthesias, weakness and areflexia. Pathogenesis of GBS not yet fully understood and curren thinking is that GBS is not a single disease but a variety of acute neuropathies with a number of related immune mediated pathogenis mechanisms. Most common immunopathologic finding endoneurial inflammation in spinal nerves segments, or around potential nerve entrapment sites (Alan's lower back, spinal stuff, remember?)
One doctor wrote in this article “Many of the autoimmune neuropathies are difficult to diagnose due to lack of generally accepted clinical diagnostic criteria, or availability of reliable serological tests. Consequently pateients with autoimmune neuropathies are diagnosed as having “idiopathic neuropathy” instead despite progression of their disease. (remember Alan has Psoriasis, so he already has autoimmune stuff going on in his body),

NOW THIS ARTICLE IS THE MOST INTERESTING THING I HAVE EVER READ AND I HAVE NO IDEA WHERE ALAN GOT ALL THIS STUFF FROM, BECAUSE HE DIDN’T SAVE IT IN HIS FAVORITE PLACES.

I have to go and nudge him to find me this website again.


See why Alan (and now me), think there just might be a LINK to the GBS thing?

Now, humor me. Alan was 14 when his mom got the GBS. Maybe they were both exposed to some bacteria, or some germ or whatever causes a person to contract GBS. What if his mom got the GBS in a worse state, and what if Alan, well, what if it lay dormant in his body (like mad cow or something, the lady upstairs from me died of Creutzfeld yacov disease which is the human strain of mad cow).

So people do acquire stuff that lingers in the system and maybe gets triggered later on in life, right??

25 years go, Alan got a fever, he was hospitalized for almost 7 days. Nobody knew what the hell was wrong with him. He ultimately got diagnosed with “fever of unknown origin”.
Took him months of staying home (kind of like when a person has mono or Epstein barr).
Then he got better but was tired for a long time. Then he GOT BETTER!!!

So tell me if you think I’m grasping at straws here.

Also, when we go to see Dr. Fred tomorrow, is there a blood test I can ask him to run to test to see if Alan was ever exposed to Guillian Barre in his lifetime.
That’s the important question I’m asking.

Thanks guys.
Melody

--there's never been conclusive proof that Guillain Barre or its variants are directly transmissable through a family; as acute neuropathies, they do seem to require some sort of trigger combined with a tendency towards autoimmune disorder.

It's that last part that's tricky, as there is some evidence that certain genetic subtypes are more susceptible to autoimmunity phenomena. Some of these are farily well known, such as the human leukocyte antigen (HLA) DQ2/DQ8 associations with celiac, and the HLA_B27 associations with ankylosing spondylitis. I suspect this may have to do with certain chemical structuirng of the body that is set by genetic background--if one has bodily tissues that are structurally more similar to certain types of pathogens, the possibility of an autoimmunity set off by an entry of these pathogens increases. (Many who have gotten Guillain Barre report a prodrome of some sort of viral or bacterial bout, often with an initial Epsten-Barr Virus infection, or a bout of cytomegalovirus, or campylobacter jejuni, a gastric infection. There have also been post-inoculation reports--probably the reason so many of us debate getting flu shots each year.)

I also take it that Alan's condition was not an acute onset, but a more gradual, chronic thing.

So, what I'm saying, I suppose, is that this is probably not directly related to his mom having had Guillain Barre--but the tendency to autoimmune disorder which may have manifested that way in her may be manifesting in Alan as a chronic autoimmune neuropathy. I know Dr. Latov and his colleagues think that many, maybe most, of the "idiopathic" chronic sensory neuropathies out there that are not caused by nutrient deficiency or impaired glucose tolerance have underlying immune mechanisms, and we just haven't found the specific antibodies and/or target antigens on nerve as of yet.

Dr. Latov:

I can't swear to it but I think that's the guy that Alan's new PN Specialist trained under.

Interesting, no?

Thanks for the information.

Now that we're getting into pathogens, and antigens, and cytomegalovirus, etc. I'm trying to picture Alan's face when I show him this posting.

He'll probably give me a look and say "thank god you're coming with me tomorrow to see Dr. Fred"

I postponed my visit to the orthopedic surgeon for my shoulder problem.

I don't want to leave Alan alone while he walks into the lions den. (Arterial Duplexes, blood tests, etc.) I told him I would write a note to Dr. Fred, asking about specific testing for GBS variants.

Alan looked at me and said "what am I, in the third grade, I'm bringing notes to doctors now?" Come with me tomorrow and I'll go with you to your appointment with the ortho surgeon."

So it's a good trade.

Let's get to the bottom of this PN. Wouldn't it be great if we ever really found out after all these years???

mel

Sounds like he is in good hands, i may have missed it, but did you tell her that Allan was getting relief from the neuro/chiropracter ?