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tinglytoes 11-18-2009 11:59 AM

just a quick share...
 
Quote:

Originally Posted by JoshuaY46012 (Post 590903)
I do have copies of all my labs! I always make sure to get a copy of all of my labs and tests/scans!

I'll post them here in a bit as I'm in a hurry. I've had B Vits checked, ANA, Protiens , Rhem Factor, Complete Blood Count, Fasting Glucose, SED Rate, A Blood Panel (Potassium, Iron, Zinc, Uric Acid. etc) TSH, Folate, Immunofixation Urine and Serum, C-Reactive, Infectious Diseases. No Spinal Stenosis or any cause in the spine, muscles normal, depleted reflexes in hands and feet and so on it's a long list

Hi Joshua, It was suggested I try Cymbalta and by gosh it worked. Long term neuropathy from axonal nerve damage due to vasculitis and kidney damage. TT

JoshuaY46012 11-18-2009 12:58 PM

Quote:

Originally Posted by glenntaj (Post 590839)
--"you've been tested for everything under the sun", do you have copies of the results of all those tests, and can you share them with us?

Forgive my skepticism, but when people say that, we often find that what they've been tested for is what their doctors can think of, which is often not as extensive as it can be.

That's part of the reason Liza Jane created her neuro testing spreadsheets (with input from many others here) to help people track test results over time, and to suggest tests that docs don't always think of. It's the most comprehensive list of possibilites I know:

www.lizajane.org

Far too many of us have been through what has been termed "comprehensive" testing only to find out it really wasn't that comprehenisve. Of course, we do recognize that there may be time and monetary/insurance considerations in attempting to gothrough even a subset of what's on the spreadsheets, but the fact remains that finding a neuropathy cause is often a long, arduous process of elimination.

These are the results I have on hand :)

Folate RBC - 498
Hematocrit - 43.2
Immunoselect Serum : IFF Serum - 928 IGM-Serum - 108
IGA Serum - 323
Total Protein - 7.10
Albumin - 4.28
Alpah-1 - .30
Alpha-2 - .82
BETA - .79
Gamma - .92

Sodium - 139
Potassium Serum - 3.6
Chloride serum - 100
Carbon Dioxide - 24
Blucose (fasting 24 hour) - 74
Urea Nitrogen - 10
Bilirubin Total - 1.8 (have gilberts disease)
Calcium - 9.6
AST - 22
ALT - 22
Alkaline Phostp. - 63
Total Protein - 7.3
Albumin - 4.9
Globulin - 2.4
Iron Serum - 70
Uric Acid Serum- 6.7
Creatinine - .8

TSH - 3.73
Westergren Sed -3
ANA W/Titer - Negative
Rheumatoid Factor - 7

CBC (w.differential)
WBC - 5.5
RBC - 5.35
Hemoglobin - 15.8
Hematocrit - 45.7
Mean Corpuscular Volume - 85.4
Mean Corpuscular HGB - 29.5 W/Concentrn - 34.6
Red Cell Distribution Width - 12.1
Mean Platelet Volume - 10.3
Platelet Count - 207
Neutrophils - 49.7
Neutrophil Absolute -2.75
Lymphocytes - 32.4
Lymphocyte Absolute - 1.79
Monocytes - 14.3
Monocyte Absolute - .79
Eosinophils - 3.4
Eosinophil Absolute - .19
Basophils - .2
Basophils Absolute - .01

Lipid Panel
Total Cholesterol - 164
Trigycerides - 75
HDL - 57
LDL - 92
VLDL - 15

Cholesterol/HDL Ratio 2.88

EMG/NCV Impressions
Left/Right Peroneal Motor Amplitude Is Reduced at the Fibular Head. I Suspect Peroneal Neuropathy At The Fibular Head. Absent Medial Plantar Sensory Latencies Suggest Small Fiber Neuropathy.

ECG
Sinus tachycardia - 119 BPM

MRI Cervical W/Wo Contrast
C4-C5 Slight Dehydration, There is minimal broad posterior bulging. Central canal and neural foramina are within normal limits.
IMPRESSIONS - No significant dis herniation or central canal stenosis. No abnormality or enhancement of the cervical cord is identified.

SSEP
Don't have sheet here with me, test was withing normal limits!

Brain MRI
Don't have report either, nothing out of ordinary.

mrsD 11-18-2009 02:16 PM

Did you engage in some sport or activity that could damage the nerves at the knee? (cause compression there)

JoshuaY46012 11-18-2009 02:26 PM

Quote:

Originally Posted by mrsD (Post 590955)
Did you engage in some sport or activity that could damage the nerves at the knee? (cause compression there)


Neurosurgeon thinks it's possible that I do things to irritate the nerves, the nerve isn't compressed, he thinks just irritated. As for the feet, the EMG showing damange to those nerves suggest that the SFN could progress into Large Fiber as well.

Are there anyother tests you would suggest? Do you see anything abnormal that could be causing the problem?

mrsD 11-18-2009 02:45 PM

I don't see any heavy metal testing. I don't see Vit D or B12 numbers. Most of your tests (I didn't check all of them) seem pretty normal...and you ARE young, and that is to be expected.

Also if I were you I'd scour your environment for toxins.

There is a condition called paraneoplastic neuropathy. But it would be unlikely for you, at your age.

You could get testing of IgM to see if you have a myeloproliferative disorder.
http://brain.oxfordjournals.org/cgi/...full/123/4/710

You may have to investigate genetic testing for CMT. If you turn out positive for this, you might be able to get opiates for pain at your age. But I think most doctors would be hesitant to start you on them at this time.

JoshuaY46012 11-18-2009 03:27 PM

Quote:

Originally Posted by mrsD (Post 590959)
I don't see any heavy metal testing. I don't see Vit D or B12 numbers. Most of your tests (I didn't check all of them) seem pretty normal...and you ARE young, and that is to be expected.

Also if I were you I'd scour your environment for toxins.

There is a condition called paraneoplastic neuropathy. But it would be unlikely for you, at your age.

You could get testing of IgM to see if you have a myeloproliferative disorder.
http://brain.oxfordjournals.org/cgi/...full/123/4/710

You may have to investigate genetic testing for CMT. If you turn out positive for this, you might be able to get opiates for pain at your age. But I think most doctors would be hesitant to start you on them at this time.

Is it possible to have CMT without the muscle weakness or wasting? I've not noticed anyone in my family with CMT which would also make this more unlikely?

This is just so frustrating, thank you for all of your help, it's just like this big circle that you must run around several times before you can acquire a simple clue to the equation!

Pain isn't exempt from any age, neither is disease or illness and sometimes I wish more doctors would understand that. I'm sure I'll have to deal with this pain until I'm of "age" to be considered for such treatment which could make the situation worse. I DO understand exactly why this measured is followed, both sides have a very painted picture!

Kitt 11-18-2009 04:35 PM

Quote:

Originally Posted by JoshuaY46012 (Post 590969)
Is it possible to have CMT without the muscle weakness or wasting? I've not noticed anyone in my family with CMT which would also make this more unlikely?

This is just so frustrating, thank you for all of your help, it's just like this big circle that you must run around several times before you can acquire a simple clue to the equation!

Pain isn't exempt from any age, neither is disease or illness and sometimes I wish more doctors would understand that. I'm sure I'll have to deal with this pain until I'm of "age" to be considered for such treatment which could make the situation worse. I DO understand exactly why this measured is followed, both sides have a very painted picture!

If you do indeed have CMT, at some point you more than likely would have muscle weakness and wasting. CMT is progressive no matter what you do. There are many types of it. It is inherited. Spontaneous mutations are rare.

I'm not certain how old your parents are (look to your grandparents as well) but, as I've said before, CMT symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident. Symptoms of CMT vary greatly even within the same family. Some CMTers have pain and others do not. Some is severe and some is not.

I hope you find the answer.

mrsD 11-18-2009 04:45 PM

Kitt can answer your CMT questions the best.

At your age, the most likely culprits are damage from activities/sports,
or toxins. (toxins include bacterial, viral, or poisons like heavy metals or certain drugs which we mentioned earlier). Peroneal nerve damage can happen from jumping and landing, or landing during parachute landings, for example.
http://www.nlm.nih.gov/medlineplus/e...cle/000791.htm
http://emedicine.medscape.com/article/1141734-overview
Your diagnosis mentions peroneal nerve problems. That is what you should focus on for now.

Metabolic problems come with age typically but not always. My PN started at 30 with hypothyroid issues.

Patients your age can have type II diabetes. Your low fasting glucose at 74, may indicate insulin resistance...it can happen now in teenagers depending on weight and diet. My fasting glucoses used to be lower than yours. Doctors typically don't pay attention to LOW glucose...and that is a shame.

glenntaj 11-19-2009 07:11 AM

And--
 
--the one thing that did jump out at me, other than what Mrs. D and Kitt are mentioning, is that for a young person, your TSH looks a little high to me, even though it was probably listed as within normal range.

the old TSH range was around .5 to 5.5, but the newer Academy of Endocrinology guidelines suggest .3 to 3.0 is a better range, given subclinical/borderline cases of hyporthyroidism. And, as Mrs. D has pointed out, hypothyroid conditions tend to result in fiborous tissue being deposited at the joint areas, often narrowing already narrow canals that nerves pass through, and thus causing nerve compression and neuropathy--and the knee joint, which the sciatic peroneal branch loops around very close to the hard tissues of the knee, certainly qualifies as such a place. (Do you feel anything going at ankles? wrists? elbows?)

You've had a decent "first line" workup, but there are so many more specialized tests, as Mrs. D mentions. Wonder if you would benefit from a full thyroid panel, with antibody measures, measure of T3/T4, and so on.

mrsD 11-19-2009 07:25 AM

my TSH was between 5 and 6 back then. The new scale didn't exist. It was the radioactive scan that diagnosed me tho.

Now my TSH is between 1 and 2. If drawn in winter it is closer to 2, if summer it is 1.5 or so. I take 75 mcg levothyroxine.

It used to be considered RARE for a male to have low thyroid functions.
But today, more men are showing up every day with problems. It is thought this due to environmental pollution, as fire retardants escape into our water supply. These are thyroid mimics, and cause serious problems regardless of gender.


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