Hi.

Today we went to see Dr. Fred to discuss the blood test results.

FYI …. Dr. Fred determined from these tests that Alan does not have anything auto immune going on. He said “Alan, I have another patient similar to you, with PN and he has spinal stenosis JUST LIKE YOU HAVE SPINAL STENOSIS.” “This guy has been through everything you have been through and has had all the tests”. The guy lives on neurontin and lyrica.”

It is Dr. Fred’s official opinion from looking at the results of all these tests, that Alan’s spinal stenosis is the cause of his PN. He says he has a surgeon who can help him but we have to correlate all this with Dr. Goldfarb (Alan’s new neurologist from the PN Dept at Methodist). Dr. Fred says to show her all these tests and see what she says and then they will all get together to discuss this and see how we shall proceed. I told Dr. Fred that Dr. Goldfarb said to Alan “Alan, if we find that this is not auto-immune, I know a back specialist that will help you. So maybe there might be help for him yet!!!!

See why we love Dr. Fred??.

I am being very thorough and putting ALL THE TESTS RESULTS HERE. I don’t expect any miracles but if anybody has the time to take a look, please do.
Thanks everybody!!!!

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

Glucose Tolerance One Hour test - 137 Reference is 70-200

His regular blood test page (the one with CBC and TSH and T4. Free, T3, Total Ferritin, the whole page was fine. Nothing kicked out as abnormal.

His Cryoglobulen,QL W?Rx Cryoglobuin, QL - Negative

His COMP METAB PANEL W/EGFR GLUCOSE - 82

His TIBC was 221 Reference is 250 – 400


FOLATE, SERUM ……15.7 Reference Range >5 .4 ng/mL

PSA, TOTAL …….2.16


ANA SCREEN, EIA W/REFL IFA
ANTI-NUCLEAR AB ……………Negative

TISSUE TRANSGLUTAM AB IGA…..<3 Reference Range <5 U/mL
Interpretation : Negative (I gather this means no celiac disease)

ANCA VASCULITIDES
MYELOPEROXIDASE AB <6 Reference Range <6 U/mL
Interpretation: Negative

PROTEINASE – 3 AB <6 Reference Range <6 U/mL
Interpretation: Negative

SJOGRENS SSA
SS-A AB <or=1.00 Reference Range <or=1.00 INDEX
Interpretation Negative Negative
Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.





SJOGRENS SSB
SS-B AB … .<or=1.00 Reference Range <or=1.00 INDEX
Interpretation - negative Negative

Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.


RHEUMATOID FACTOR <7 Reference Range <14 IU/mL
(Dr said that he does not have Rheumatoid Arthritis)


C-REACTIVE PROTEIN 2.3 H Ref Range <0.8 mg/dL
SM, AB, EIA ……..…NEGATIVE

RPR W/TITER & CONF RFX
RPR SCREEN - Nonreactive

LYME DISEASE IGG, IGM, WB
LYME DISEASE IGG, WB
LYME DISEASE INTERP (IGG) …..NEGATIVE

18 KD (IGG) BAND Nonreactive
23 KD (IGG) BAND Nonreactive
28 KD (IGG) BAND Nonreactive
30 KD (IGG) BAND Nonreactive
39 KD (IGG) BAND Nonreactive
41 KD (IGG) BAND Reactive
45 KD (IGG) BAND Nonreactive
58 KD (IGG) BAND Nonreactive
66 KD (IGG) BAND Reactive
93 KD (IGG) BAND Nonreactive

IgG Western Blots which have 5 (or more) of the 10
Significant bands are considered positive for specific
Antibody to B. burgdorferi. (Proceedings of the 2nd Conf. On
Lyme Disease, Dearborn, MI 1994.)

LYME DISEASE (IGM). WB
LYME DISESE INTERP (IGM) Negative

23 KD (IGM) BAND Nonreactive
39 KD (IGM) BAND Nonreactive
41 KD (IGM) BAND Nonreactive

IgM Western Blots which have 2 (or more) of the 3
Significant bands re considered positive for specific
Antibody to B. burgdorferi. (Proceeding of the 2nd Conf. On
Lyme Disease, Dearborn MI. 1994.)

DNA (DS) ABS <30 Negative

ANGIOTENSIN CONV ENZYME 52
PM – SCL AB see note Negative
PRELIMINARY REPORT -
This test is delayed because reagents re unavailable from the manufacturer.
Results are expected by 12-28-06. This test was developed and its performance
Characteristics determined by Quest Diagnostics Nichols Institute. It has not
Been cleared or approved by the U.S. FOOD AND DRUG Administration. The
FDA has determined that such clearance or approval is not necessary.
Performance characteristics refer to the analytical performance of the test.

Test performed by:
Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, California 92690

End of Report

The only thing out of range was the c-reactive protein number--and that might be expected in someone like Alan who has had heart issues in the past. (CRP is a sensitive, though not very specific, marker of inflammatory processes). It might be a good idea to see if that could be reduced a bit through diet. (I'm sure Mrs. D will have some suggestions, as well as some info on possible med interactions.)

What I've always wondered about Alan--and I believe I wrote about this on the old BT before--is whether his neuropathic symptoms may not only involve spinal stenosis working on his spinal cord but whether he may have some nerve root issues in his lower spine (the lumbosacral plexus, where the spinal cord seperates into a number of nerve trunks). Lumbar spine/nerve root issues (the area is called the cuada equina--literally the "horse's tail", as that's what it looks like--Liza Jane can tell you a lot about this area) are VERY common in older people who have done considerable physical work in their lives. Am I correct in assuming he does not have symptoms in his hands, but only his lower body? And, forgive me if I've forgotten this, but has he had full spinal MRI's recently?

As far as Alan ever doing physical work in his life, let me put it this way. He sat on the couch during our marriage.

When he went to work, he carried a big bag full of supboenas. Now THAT migh have thrown his back out. But he rarely complained of back pain.

He did however break two or three seats in the cars he had at the time. The seats were always turned to a funny direction. He did this in all the car seats. Never could understand why, but that's how he drove.

Yesterday Dr. Fred did say (about the pn in his toes), Well, Alan might have some fibromyalgia going on".

And as far as the C-reactive protein thing, and his diet, This man eats only veggies, fiber, whey shakes, salads, nothing with sugar or salt.

So I have no idea what could be taken out of or added to his diet.

And his had a recent MRI last month right before we went to see Dr. Elowitz, the neurosurgeon who put his films on the wall and said "Oh, I see significant spinal stenosis but I cannot operate".

So how come some people CAN operate and others CAN'T.

Maybe it's in a place where they figure they might nick a nerve or something??

Melody

Once I realized I had spinal stenosis and cauda equina syndrome early in the year, I added a work-up for this to the lizajane charts. I had been worked up at Hospital for Joint Disease in NY, the Mayo Clinic, and seen the esteemed Dr Latov. Yet no one ordered an mri to look for spinal stenosis. Back pain, bladder/bowel symptoms, and neuropathic changes spells cauda equina, but you don't need to have 10+ symptoms to problems from spinal stenosis.

Glad he was diagnosed. Is surgery being recommended?

'negatives' ARE GOOD!

As for spinal surgery, I've not a clue. It could be that doc doesn't do surgery or his condition isn't bad enough to deal with the risks it entails. It is invasive surgery without doubt.

I just hope for your sake [you have to live with the dear, after all] that they don't just toss up the hands and say 'Live with it'. Not acceptable!

Just a word of warning tho: Quest diagnostics in CA will probably file the claim w/your insurance in that state, so you will probably get a 'Not in our File' claim rejection. Call your local Plan's office and be prepared to spend a few hours on HOLD until you get someone who can actually work it out. When My work went there for testing....it took about 5 months to get it all clicking in the right places. A stressor we don't need, shouldn't have to deal with, but IT HAPPENS. Keep all those papers and EOB's in one place handy to cite off claim#'s etc to sort it out.

Good holiday thoughts and hugs for the interim - j

Oh Brother,it never ends around here!!!

He comes home today from his podiatrist and he says "I have two infections in both my feet". I said "what???? He says "yeah,and I need to have an operation on the ulcer underneath the foot, it's still not healed after 8 months and the doctor wants to talk about me having the operation". I took his sox off, took one look at the redness on the tops of his feet, called up Dr. Baird and when he got on the phone and said "Hi Mel", I said "you think it's cellulitis, right?" and he laughed and said "boy, you are good", but he said "just to make sure, I have him on an antibiotic and he can't get his feet wet". I said "no problem, now let's talk about the operation".

He said "well, this has been going on for 8 months, enough is enough, I have to shave the bone from the side of his foot and his ulcer will finally heal." I said "when do you want to do this?, and he said "well, sooner rather than later". So next week when he goes to see Dr. Baird again, I'll go with him.
I then called Peninsula Hospital and they no longer have the courtesy van that picks you up from the house and brings you home from the hospital. I asked the ambulette service how much they charge and it's $286.

I then called up Access a Ride and asked "do you go to Far Rockaway, to Peninsula Hospital and they said "sure". So the whole thing will cost us $4.00 when he has to go to Peninsula Hospital for the surgery!!!!

What is he going to come down with next??????

This will take 3 weeks to heal (that's what Dr Baird said).

Seems like all we do is see podiatrists, primary care guys, and neurologists.

Oh he has a nasty bruise on his ankle (I think he must have bumped it at the gym and because he's on plavix and aspirin, well,..........!!!

But.... the other night he woke up in the moning with a big scratches on his calf. I said "what on earth is this, you are bleeding".

He said "the demons got me during the night". I said "I think you scratched yourself with the back scratcher in your sleep".

Now we're doing demons....................jeeeeez

melody