Liza jane.

I just looked up some blood test results on one of Alan's blood tests from April 3, 2003.

ANTINUCLEAR AB W/RFX IFA
ANTI-NUCLEAR AB POSITIVE
ANA TITER & PATTERN
ANTI-NUCLEAR AB TITER
Reference Range:
<1:40 Negative
1:40 - 1:80 Low Antibody level
> 1:80 Elevated Antibody Level

Interpretive Note: The above results suggest the possibility of clinically significant autoimmune antibodies that may be detected by ENA (Sm, RNP, SS-A, SS-B, Scl-70, Jo-1) antibody assay or a dsDNA antibody assay.

Then in a CBC W/DIFF & PLT, the only thing that kicked in the abnormal range wa PLATELET COUNT which was 132. AND ESR,WESTERGREN which was 30.

I want to mention something about Alan's Ferritin Level. In a test from January 3, 2003, his ferritin level was 436.4. The range is 35-250 so he's high, right.
Well, yesterday when we came home from the birthday party, his cousin was driving the car and we were talking about a blood test she took a long time ago, and the only thing odd was her ferritin level, it was about 1400 so she had to give blood 3 times and it was normal after that.

Don't know if that info helps.

Also Alan took a hecromatosis test in 2003 and all was fine. They said "no, he does not have hecromatosis". We checked on that because one of his other cousins had it.


Oh, his Iron Profile Level was as follows:
Iron - 61
TIBC - 258
transferrin Sat 23.6

Nothing bad about those numbers, I think.

And I found a test named Gliadin Antibody IgA and IgG (If Quest)
Anti-Gliadin Antibody IgA: 8
Anti-Gliadin Antibody IgG: 8
Ref Text :reference range for Fliadin AB:neg. <20;weak
pos. 20-30; strong pos >30

I have no idea what this means.
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I forgot to say one more thing (and it might be important).

Alan's mother had Guilliam Barre Syndrome when she wa 48. She died many years ago at the age of 53. She was obese and had a heart attack.

But she was hospitalized for the GB for many months. Alan was 14 at the time.

We have mentioned this to every single doctor we have seen and they all pooh-poohed this.

I'm wondering???????????????????????????

Melody

OH, ALAN HAD HIS HEART SURGERY, (ANGIOPLASTY AND THE STENTING AT METHODIST)

Yeah, i see what you mean Melody, gees it makes it hard.
I know that some doctors and/or specialists don't like chiropractors, herbalists, naturalpaths, accupunture etc, they probably have their reasons i don't know, but i think that alternative medicine can [sometimes] offer more than conventional medicine can in [some circumstances] but not all of course.

This neuro/chiropractor has done a lot of study to be what he is [neuro/Ch] and the results from spinal manipulation has definatly done something to calm his neuropathy down, seeing our spine does affect differant parts of our bodies there must be something in it, but what is the million dollar question.

An MRI is fantastic machine but makes me wonder that when people have an MRI, the doc's are looking at xrays that have been taken whilst a person is in a laying down position and perfectly still, and the MRI xrays shows pictures of it in all in differant angles, but this is not the same in real life, like as we move bending, stretching, turning, and even sitting which all would have an affect on the spine, i can't work it out, its well over my head.
all the best
Brian

Look, I'm not a doctor and don't have a crystal ball, so I can't say for sure what's going on with Alan.

All I know is, after I was diagnosed with small-fiber PN, I later discovered that my pain could be aggravated by pressure at certain places in my neck. That does not in any way fit the picture of small-fiber PN.

SFPN is not in itself positional. Only compressive neuropathies are positional.

I, too, was told that my neck is fine, my spine is fine, and so on. However, I recovered through PT, manipulation, trigger-point treatment and other stuff--all of which work only on compressive neuropathies.

So what gives? When I was hanging out on TOS sites, I heard about a doctor in PA who has a theory about TOS and SFPN. He thinks early TOS sufferers get small fiber pain, because their compressions are technically mild enough that only the long, thin axons of the small fibers are affected. So they'll get burning, tingling, or whatever weird sensation their nerves are prone too--but they won't get total numbness or motor loss they way somebody with full-blown TOS might.

Personally, I think the same thing can happen in other compressive neuropathies besides TOS, where a bulge, tight discs or some other problem chokes and aggravates the tiny small nerve fibers. In these cases, the irritant is almost never visible on MRIs. It's too minor, or it may be muscle-related, or not obvious when the patient is lying on the table in a certain position (much like the way TOS itself is invisible on MRIs).

Doctors don't recognize this syndrome. But my PT people had seen it multiple times.

Anyway, something like that happened to me. Maybe it happens to Alan, too.

I just went over to him and massaged his thighs and calves again because I saw he was sitting in his lounge chair and moving his foot up and down and sideways, like he always does when he is in neuropathy hell!!

So as I massage his thighs, he goes: "why on earth does this take away my pain?". I said "Alan, it's a mystery. Maybe it is auto-immune, maybe this, maybe that"

I mean we can go around in circles, now can't we??

Oh, I've been reading about lyrica and his primary care guy would give it to him but I explained that Alan cannot take neurontin and if lyrica is similar to neurontin, I'm afraid to encourage Alan to try it.

He tried neurontin twice (the lowest dose), and yeah, it took away the pain but he got violently ill (flu symptoms and fevers, both times he tried it).

So he's hesitant about going in that direction again.

Do you think if he tries lyrica the same thing might happen to him?.

By the way, he's allergic to celebrex and all sulfa drugs (if that helps any).

melody

So if increased blood cirlcation improves his PN, makes me wonder if magnets could help him as they increase blood circulation to, i mean strong magnets rare earth magnets are cheap and do the job, about 3,000 gauss reading, works fine for me.
might be worth a try, never know.
Brian

I have the three balls in the magnassager, they pop out.

I'll take them out, put them on Alan's thighs and put something around it so they don't fall off.

Will update.

thanks so much.

Melody

P.S. I just googled poor circulation and a whole bunch of stuff came up on Peripheral Vascular Disease.
Now Alan was checked for that when he went years ago to Coney Island Hospital. The worst place in the world by the way. They did a doppler (or something down by his legs) and the guy said "you have 20%". That's all I can remember but the guy said "this is not what is causing the PN".

I copied and pasted.
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What causes poor circulation to the foot:
Poor circulation is most commonly caused by a progressive blocking of the arteries in the leg (athersclerosis). Those with diabetes are more likely to develop poor circulation to the foot. Other risk factors for developing poor circulation include a lack of physical activity,smoking, high blood pressure and high cholesterol.

The effects of poor circulation (peripheral vascular disease) on the foot:
The biggest affect of poor circulation on the foot, is that its problems (such as sores, infections, cuts, etc) develop, they do not heal as well as they should. In many cases they do not heal at all without special care. The reason for this is that the blood carries vital elements (eg oxygen) that the bodies tissues need for vitality and healing.

Treatment of poor circulation:
Poor circulation can be treated by your doctor or vascular surgeon in a number of ways:

* Good control of the blood glucose level is very important if diabetes is present.

* Other risk factors - such as lack of exercise; high blood pressure; smoking; and high cholesterol levels also need to be addressed.

* Drugs can be used to prevent the blood clotting (antiplatelet agents and anticoagulants).

* Angioplasty can be used to enlarge the narrowed peripheral arteries.

* A vein from another part of the body can be used to bypass the narrow or blocked artery can be used by the vascular surgeon.
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Now, I know that this is a stretch, but the fact that Alan had to get a stent in his chest because of a blockage, and because when I massage his thighs and his calves, he goes to heaven, could this be a POSSIBILITY!!!!


Now Alan is already going to the gym, he lost weight, he's on plavix, and I have no idea if indeed they will find out it's his circulation (BECAUSE ULTIMATELY IT HAS TO BE SOMETHING THAT IS DOING THIS?', right??

I'm sure whichever doctor he goes to now will test him for Peripheral Vascular disease. Is there a definitive test so that when the doctor gets the results, he will go : "Aha, Alan, now we know, this is what you have". or OH SHOOT, YOU DON'T HAVE IT!!!"

Thanks guys,
Melody

I don't think the Magnassager balls are magnetic themselves. The unit is an electromagnet
field producer, and hence moves the balls around.
That is why it is so heavy.

Brian,
There is an MRI now that shows what's going on when you are standing up. It is actually called a standing MRI. I just found out about it.

Billye

I Hate Mri S They Are Very Closterphbic Just Had An Mri On Dec 4th
And The Jackhammer Noise Drives Me Nuts It Was Along 30mins
No The Quack Wants It Done With Contrast I Said Knock Me Out