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harmonyboy74

New member
Joined
Oct 22, 2012
Messages
8
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
VA
City
Gloucester
Vitamin D was low in first tests. After completing a round of 50,000 units once a week and spending 10 days in the sun, I was tested again and barely in the normal range. Apparently that didn't alarm anyone though so I'm not sure of it's significance. I have started taking D3 every day though.


Tests: (1) Vitamin D (9613562)
25 OH Vit D 32.9 ng/mL 32.0-100.0
Test Name = 25 OH Vitamin D Total
 

harmonyboy74

New member
Joined
Oct 22, 2012
Messages
8
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
VA
City
Gloucester
Tests: (1) Folate RBC (1011989)
! Folate Hct 45.8 %

Tests: (2) CK (1000135)
CK 135 IU/L 49-397

Tests: (3) Vit B12 (1001550)
Vitamin B12 Lvl 465 pg/mL 180-914

Tests: (4) Folate RBC (1011989)
! Folate Hct 45.8 %
! Folate RBC 976 ng/mL 366-1356
New testing methodology. The reference ranges have changed for this test
due to new testing methodology/instrumentation. Results may differ from
prior testing.

7/9/2012 11:48:00 AM Aldolase
ID: RMG Shared Laboratory 01177211
Note: All result statuses are Final unless otherwise noted.

Tests: (1) Aldolase (9303240)
Aldolase-M 6.3 U/L <7.7
 

harmonyboy74

New member
Joined
Oct 22, 2012
Messages
8
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
VA
City
Gloucester
Tests: (1) Prot Elec (1007316)
Total Pro (SPE) 6.7 gm/dL 6.4-8.3
! Albumin % 52.6 % 47.0-61.6
! Alpha 1 % 4.0 % 2.0-4.4
! Alpha 2 % 14.7 % 8.9-14.9
! Beta % 13.0 % 10.8-16.2
! Gamma % 15.6 % 9.8-24.4
! Albumin g/dl 3.5 gm/dL 3.1-4.9
! Alpha 1 g/dl 0.3 gm/dL 0.1-0.4
! Alpha 2 g/dl 1.0 gm/dL 0.6-1.2
! Beta g/dl 0.9 gm/dL 0.7-1.3
! Gamma g/dl 1.0 gm/dL 0.6-2.0
! Comment "Result Below..."
RESULT: Protein electrophoresis pattern appears normal. No monoclonal paraprotein
! Comment identified.
! Pathologist ID S.R. Backus, M.D.

9/13/2012 3:16:00 PM MG/LES Evl
""
ID: RMG Shared Laboratory 01177211
Note: All result statuses are Final unless otherwise noted.

Tests: (1) MG/LES Evl (9600848)
! P/Q-Type 0.00 nmol/L <=0.02
! N-Type 0.00 nmol/L <=0.03
! ACHr Binding Ab 0.00 nmol/L <=0.02
! Striate Mscl Ab Negative titer <1:60

9/13/2012 3:16:00 PM Immunofix

ID: RMG Shared Laboratory 01177211
Note: All result statuses are Final unless otherwise noted.

Tests: (1) Immunofix (9613825)
! Immunofix Ser See Below
RESULT: No monoclonal protein detected.
 

Grateful

Distinguished member
Joined
May 11, 2012
Messages
302
Reason
Learn about ALS
Country
Uk
State
Greater London
City
London
You haven't posted your spirometry results, which are the only thing that I would be less than totally clueless about, but I am concerned to see that notwithstanding the fact that your neuros have told you that you do not have ALS/MND you are still saying only that it's very probable that you don't have it whilst reciting things which you think suggest that you do.

In other words you are still obsessively pursuing a diagnosis which your doctors have told you categorically isn't the case.

And yes, COPD is treatable, but in order for it to be treated you need to see the doctors and allied healthcare specialists who can treat it; I'm wondering which bit about COPD being a progressive and degenerative disease you don't understand. Treatment cannot reverse the condition; all it can do is to try to slow down the rate of deterioration and improve your quality of life.

And neither of those things will happen if you carry on staring at your tongue instead of following up the only genuinely nasty thing to emerge from the extensive medical testing you have had done...
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
I see that Notme has asked whether the X-rays and CT scan showed anything obstructing the lung; it is a common misconception of COPD that it would show up on an X-ray or CT scan.

COPD is diagnosed by spirometry. There are rare cases where skeletal muscle wasting is the first symptom, preceding the breathlessness.

Grateful, I have COPD, and have since I was in my early 20's, and know quite a bit about it, and how it is diagnosed.

I asked about the CT to be sure they had ruled out growths and enlarged glands and such in the lungs.

A CT of the lungs does, however, show changes that are consistent with COPD, I've had several. Their main role today, though, seem to be to find clots and to find early cancer. I was lucky, one of mine found a tumor on my liver purely by accident, that had spread through my diaphragm. Another found a growth, and yet another found clots and emphysema.

And, yes, I realize you've probably also had several if not many for your TB
 

Grateful

Distinguished member
Joined
May 11, 2012
Messages
302
Reason
Learn about ALS
Country
Uk
State
Greater London
City
London
Notme

I don't have TB; I have severe bronchiectasis in both lungs and I was diagnosed by the then gold standard of bronchograms at the age of five. Nowadays the gold standard for diagnosis of bronchiectasis is by CT scan, and you are right in thinking that I have had a number of those. But my doctors stopped doing them long ago; my ordinary chest X-rays provide a game of 'hunt the lung', and any competent physician with a stethoscope would accurately diagnose me without any imaging at all. The only thing my doctors use my CT scans for is a teaching aid; according to the scans I should have died a long time ago. Of course, I have to do around six hours of therapy a day to stay alive but that is a price I'm willing to pay; some people aren't.

The reasons that CT scans are not used in the gold standard diagnosis of COPD are twofold; it has never been possible to achieve a consensus that they are of value, but there is a consensus that people will die as a result of the scans. Most people with COPD are past or present smokers and thus are at a higher risk of certain cancers; whacking them full of radiation is an excellent way of raising that risk still further.

Unfortunately it's perfectly possible that your tumours were a result of your scans, which is why the World Health Organisation's protocol excludes them. And your emphysema, which is nowadays identified as COPD, would have been diagnosed just as well with spirometry without putting you at risk of cancer...
 
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