Okay, just came back from Dr. Fred (Alan had to go alone because I'm all bent from my sciatica today). But he knew all questions to ask.

Oh, Dr. Fred said he should definitely have the spinal tap. So that's a go!

Okay, here is what it says about all the blood work he took.

-----------------------------------------------------------------------
Test Result Flag Reference
IgG 1820 H 751-1560 mg/dL
IgA 401 82-453 mg/dL
IgM 103 46-304 mg/dL

----------------------------------------------------------------------

Test Result Flag Reference
SPEP
Protein Electro A broad, diffuse (polyclonal) increase in Gamma-
Globulin is present
1/25/07 0401:
PROTEIN ELECTRO previously reported as

Total Protein 8.6 H 6.0-8.3 g/dL

Test performed at Quest Diagnostics
One Malcome Avenue, Teterboro, NJ 07608
unless otherwise noted

ALBUMIN FRACT 4.30 3.50 - 4.70 g/dL
ALPHA -1 FRACTIO 0.28 0.10 - 0.30 g/dL
ALPHA 2 FRACT 0.79 0.50 - 1.00 g/dL
BETA FRACTION 1.09 0.80 - 1.40 g/dL
GAMMA FRACTION 2.14 H 0.60 - 1.60 g/dL
IMMUNOFIX SERUM
IMMUNNOFIXATION SERUM:

No. monoclonal proteins detected

REF. RANGE. No monoclonal proteins detected

-------------------------------------------------------------------------

Test Result Flag Reference
SENT OUT TEST
HU antibody Negative Negative

TEST PERFORMED BY: QUEST DIAGNOSTICS NICHOLS
INSTITUTE 33608 ORTEGA HIGHWAY SAN JUAN
CAPISTRANO, CA 92675
----------------------------------------------------------------------

Test Result Flag Reference

3 hr GLU TOL
FASTING GLUCOSE 80 70-110 mg/dL
GLUCOSE 1 HR 108 70-200 mg/dL
GLUCOSE 2 HR 74 70-140 mg/dL
GLUCOSE 3 HR 38 L 70-125 mg/dL

-------------------------------------------------------------------

It also says "continued on next page" but there are only two pages.
I have no idea what it may say on another page. When we go and see Dr. Goldfarb, perhaps she'll have other stuff but this is all that Dr. Fred gave to Alan.

Somebody explain this Protein Electro polyclonal increase in Gamma-globulin thing to me please. (and anything else you care to explain would be most welcome).

Also, about 24 years ago, Alan was hospitalized in isolation because he had a fever and they had no idea why. They ran blood tests at that time but could not conclude anything. They finally sent him home and the diagnosis was probably mono but it was put on the form as "fever of unknown origin".
Just sharing this info with you if it might be related to any anti-bodies in this test.

Thanks much.
Melody

Apparently, the quantitative immunoglobulin test came back with increased IgG levels, and the specific analysis of these (that's what the SPEP is for) has noticed a broad but diffuse polyclonal response. That's consistent with the overall gamma globulin levels being high--and points to some sort of immunological reaction. It may be autoimmune, and it may be a reaction to an actual bacterial/viral invader (the IgG immunological response to pathogens tends to be longer-term than the IgM or IgA responses, so it's qutie possible if it is an invader, it's not currently acutely active).

The good thing here is that there were no monoclonal antibodies detected. Those, as I wrote about before, can often be associated with blood cancers. And they are well known to be associated with neuropathy. And--the negative anti-Hu test means his situation is unlikely to be linked to antibodies the body might be producing against tumors (particularly those of the lungs).

The part that polyclonal antibodies play in the development of neuropathy is less well-known, though it can be associated with cryoglobulins that come from infectious processes or from vascultic conditions:

http://www.neuro.wustl.edu/neuromusc...m#cryoglobulin

I would wonder, given this, if Dr. G would now titer him up for cryoglobulins and for some of the other vasculitic antibodies. If I remember correctly, he's already had a lot of those tests, and they were negative, but I dont know if all of them were included. She might also want to test his immune complement to look for signs of polyarteritis nodosa, another autoimmune vasculitic condition that can result in neuropathy:

http://www.neuro.wustl.edu/neuromusc...nimax.html#pan

(This is consistent, by the way, with the finding that he once has an anti-nuclear antibody titer. But I don't remember you mentioning that he had other symptoms that are often associated with this--fever, skin discolorations, kidney problems. But feel free to mention the cryoglobulin/polyarteritis possibility--and you can tell her it came from me, if you'd like.)

One other thing--was that 3-hour glucose value REALLY 38? That would be a major reactive hypoglycemic reaction, and that may signal an overproduction of insulin and some degree of insulin resistance.

Yes, the number was 38.

I will print out your post (didn't understand one word, except that he doesn't have cancer) because of the negative monoclonal thing!!! So that's good thing.

I have never been so confused in all my life with clonals, and titers, etc.

Oh my god.

Will this journey ever have ANY KIND OF AN ENDING??
Oh well.

I'll phone up Dr. Goldfarb tomorrow and ask about the cryoglobulins.

And I thank you from the bottom of my little heart.

I'd thank you from my whole heart but I'm so bent from sciatica I can't stand up straight ....LOL

BE WELL AND THANKS MUCH.

Melody

Yours is a BIG heart, Melody.

Shirley H.

A reading of 38 at 3 hrs?

Some people would be unconscious at that reading!

I think you should discuss this with the doctor. And perhaps have a
fasting INSULIN level done. If this is very high, combined with a very
low blood sugar reading like that 38, it could indicate an insulinoma tumor
which is secreting too much insulin.

No wonder Alan is craving sweets!

Okay, I read what Mrs. Doubtfire posted so I immediately called Dr. Fred's office. Frank, the nurse (who is studying to be a doctor and who knows us), well, I immediatly had him pull the blood test out of the computer and he said "Let me run this by Dr. Fred". Dr. Fred immediately came on the phone and I ran the possibility of the insulinoma tumor by him. He said "absolutely not".

He said "If Alan always had low blood sugar readings, he'd be hypoglycemic, but this was a 3 hour glucose tolerance test. Don't worry, the next time Alan comes in, I'll do a fasting insulin level test. I am not worried about this 38 reading."

I said "you know how he craves everything with splenda on it, and he goes, "yes, I know but don't worry, he doesn't have a insulinoma tumor".

I then told him Alan is scheduled for the spinal tap on February 5. He said "good", Next time he comes in we'll do another glucose tolerance test on him so don't worry". He seemed to know what the hell he was talking about.

I check Alan's sugar every day. It's always around 85 to 90. And as for craving sweets,(I don't know if you'd call this craving sweets, but when he does eat something he enjoys it more if it has splenda on it. He can't taste things that aren't sweet. Is that the same as craving sweets? Every night he has a bowl of fiber one cereal with some splenda on it. He never eats anything with sugar and he eats fish or chicken with veggie patties at night. I was told a long time ago that his enjoying things that are sweet was because of the taste perversion from the fentanyl pain patch he was on for over 2 years. That it did something to his taste buds. He can't have anything with salt either.

Will a spinal tap reveal anything about an insulinoma tumor?

Honestly, Dr. Fred didn't just brush me off, He had the blood tests in his hands (Frank had given it to him), he looked at it and said "Melody don't worry, it's the total count we look at. He never has low blood sugar.

So who am I to trust here.

I'm going to look up insulinoma tumors on the web.

Melody

An insulinoma is a tumor in the pancreas that produces too much insulin.

Causes, incidence, and risk factors Return to top

The pancreas is an organ in the abdomen that makes the hormone insulin. Insulin is necessary to regulate blood sugar levels. Tumors of the pancreas that produce too much insulin (hyperinsulinemia) are called insulinomas.

High insulin levels cause low blood sugar levels (hypoglycemia). Hypoglycemia may be mild, leading to symptoms such as anxiety and hunger, or severe, leading to seizures, coma, and even death.

Insulinomas are rare tumors. They usually occur as single, small tumors in adults. They are very rare in children. Most children with hyperinsulinism have multiple areas of overactive insulin-secreting cells in the pancreas, rather than a single tumor.

Most insulinomas are benign -- only 5 to 10 percent are cancerous. People with the genetic syndrome called multiple endocrine neoplasia Type I (MEN I) are at risk for developing insulinomas.

Symptoms Return to top

Sweating
Tremor
Rapid heart rate
Anxiety
Hunger
Dizziness
Headache
Clouded vision
Confusion
Behavioral changes
Convulsions
Loss of consciousness
Signs and tests Return to top

The person's blood may be tested after fasting for:

Low blood glucose
High blood insulin level
High C-peptide level
---------------------------------------------------------------------

I'll print this out and bring it to Dr. Fred at my next visit.
He probably thinks I've lost my mind but better to be thorough than not, right?
mel

until...IF and WHEN it might happen...which is probably NOT! You gotta admit, tho, dear person, that YOUR doc[s] are far, far more responsive than the 90% who have docs that go simply DUH? ?? What's it all mean to you? Well, fasting tests at first, then, maybe, just maybe...tho not likely a 5 hour GTT. Then, you and the docs are off the hook?

Have the docs look at the blood tests, for any immune issues and then let them lead the way from there....Since it's not either life-threatening or incapaticating in any way, there's really no way to justify further testings unless a new and serious kind of 'wrinkle' comes up! I am seriously hoping and prayng that is NOT the case here, And believe it isn't an issue.. so far.

Put bluntly, neither of you is potentially wheel-chair bound, far from it...Just work hard to keep it that way!

Hugs and good thoughts always! - j

A further note: This is why keeping TRACK of the #'s, even if you don't understand them is important - Liza Jane's charts are good for you to use to plug in what you can...it's not just the test-to-test changes that are important, it's the times of the tests, fasting or not, and the sites/labs doing the testing...all of which squirrells things up when trying to sort it all out.

Boy, what would I do without you. You are one thorough cookie!!!

I just got off the phone with the doctor who will perform Alan's lumbar puncture. He's a neuro-radiologist named Dr. Mirchandani. Very very nice and said to me "I gather you have some questions you'd like to ask me".

I said "well, let's start with what meds does he stop taking?" And he went on to explain, no plavix no aspirin from Feb 2 till the spinal tap. I know about the blood thinning so he didn't have to go into that.

He explained that you find all sorts of goings on in the body from the spinal fluid. He took me through the whole procedure right through the recovery. I can be with him in recovery so that's good. The thing is he must be quiet and lie flat for at least two hours. He asked me if, when we leave to go home, can he lie flat and I said "No, we take the access-a-ride bus and he has to sit up" so he said "okay, we'll give him another hour in recovery so he'll be fine to go home. He said, "the funny thing about lumbar punctures is sometimes you get a headache the next day." He has had two lumbar puntures so he knows.

He was very nice and answered all my queries. So we have to be there by 9:45a.m. and will be picked up by 2 p.m. By then Alan will have rested enough to go home. I've cancelled his appointments for a few days after so he can relax. Knowing him he'll want to go and lift weights.


I then asked the doctor if I could ask him a question about the 3 hour glucose tolerance test reading of 38 in the last reading. I mentioned the insulinoma tumor and he said "I know all about those things but you have to have other symtoms to go along with a low reading. For example, a person would eat a nice meal and then take his sugar reading and it would be about 10. That would be a better indicator. Also, there are sweats and many low sugar readings. Alan doesn't have that so don't worry".

So I can relax a bit for now.

Let's just get this spinal tap over with and see what comes up.

So I shall, as always update.

Imagine, Alan goes to the gym, and I spend all day talking to neurology departments, spinal tap departments, Dr. Fred. Boy does my husband owe me breakfast tomorrow morning or what???

Melody
P.S. thanks Mrs. D.
So we are all set for February 5th.

Melody,
He has to understand that he needs to do nothing but take it easy for the entire day. And drink a good amount of fluid. The doctor will likely give you instructions, but be sure he understands that he HAS to follow them. I've had the post spinal tap headache and believe me it's a headache from HE**!!!

Billye