Saturday, August 30, 2014

Life is good :)

On a whim my husband and I decided on Wednesday to travel to Santa Fe, NM for the Labor Day weekend. We rented a little adobe house and headed out Thursday morning.

We chose this location because of the mild temps and low humidity- both a great plus for ppl with MS. It has been a long time since I took such a trip- with the immune recovery phase and then just building back my activity tolerance.

The trip has been an eye opener- we have walked most places so far- including all day Friday, about a 5 mile loop between the CASA, breakfast, the town plaza, shopping & home. We then drove up to a local hot springs and did not get home until after 11pm.

It was a very full day but a wonderful one!

I continue to be amazed at my endurance. This amount of activity & walking would not have been possible last year, really the past several years. Despite having the time to travel, I had started to forgo travel due to fatigue and muscle aches. If we did travel a significant part of each day was designated for a rest back at the rental and even 1-2 days during each trip where we did no activity at all.

To be traveling like a 'normal 40 year old' again is a true blessing and my husband & I have marveled at this every day of our vacation!

I have been doing a lot of reading on Lemtrada & Tysabri (my previous therapy) use around the world. I can tell you I get downright frustrated at patients that have the choice of one of these effective therapies but chose neither!

For my ability Lem is the obvious better choice but to choose 'no effective therapy' confounds me. I have learned to temper my opinion on other sites though. I will state my opinion or experience but have encountered this attitude enough to know there are people out there more afraid of a potential drug side effect then the disease itself.

When such effect therapy is there for the taking and the alternative is a wheelchair and debilitating fatigue I guess I just really don't understand the choice.

I am glad to have had the opportunity and thankful for the improvement!

In another strange twist in this story I was contacted by a foreign journalist who wanted to know my story but was cautious. After an hour long conversation she admitted that at first she suspected I was a drug company 'plant' and not a real patient or person at all! I guess our conversation convinced her otherwise but it was a strange accusation to come across...

For those with similar questions please let me assure you I am a real person and this is my story(just not my real name). I do not work for anyone other than my husband, least of all the drug company! It would have its advantages though- if I did work for Genzyme the whole process would have been a lot cheaper!

Saturday, August 23, 2014

Final Labs, Week 20

Labs taken August 22 are final.

Interesting on these my WBCs, Absolue Neutrophils, and Absolute Lymphocytes are lower. I think I have had a mild stomach bug (possibly H.Pylori for which I was treated). It may be something more or nothing at all. I will be interested to see what the T&B Cell Subset Panel shows. That should be back early next week.

Also my T&B Subset Panel is so different I am wondering if it can be accurate. I am tempted to re-test but as I get labs every 28 days and that is quite enough, thank you, I think I will wait to see what September brings. These seem errant to me.

My Eosinophils are higher and I have been having more congestion that usual, possibly this is allergies (which until 2 years ago were never a problem for me).

Important positives: I am not anemic, my liver and kidney are fine and I have no clotting problems.

Urine Testing: I am testing more frequently at home for glucose and protein in the urine, those tests dont show here. The reason for the screening is Good Pasture's syndrome, which needs to be caught within 3 days of onset. One US case has resulted in the need for a kidney transplant. This is VERY RARE with Letmrada but I think monitoring every 3 days is better than monthly.

I will post the finals when they are in.:)


Baseline
2014


CMP
Mar 25
May 2
May 30
June 27
July 24
Aug 23
Normal Range
Glucose
70
86
98
98
79
82
65-99
mg/dL
BUN
16
17
13
14
13
19
7-25
mg/dL
Creatinine
0.94
0.96
0.99
1.13
1.00
1.09
.5-1.10
mg/dL
eGFR
76
74
71
61
70
63
> OR = 60
mL/min/1.73m2
B/Creatinine Ratio
n/a
n/a
n/a
12
n/a
74
6-22
(calc)
Sodium
139
138
140
138
134
138
135-146
mmol/L
Potassium
3.6
4.9
4.5
4.3
4
4.1
3.5-5.3
mmol/L
Chloride
106
106
109
106
102
103
98-110
mmol/L
Carbon Dioxide
25
23
22
21
23
25
19-30
mmol/L
Calcium
8.7
9.1
9.3
9.4
9.5
9.4
8.6-10.2
mmol/L
Protein, Total
5.7
6
6.2
6.6
6.9
6.6
6.1-8.1
g/dL
Albumin
3.7
4.2
3.9
4.3
4.4
4.2
3.6-5.1
g/dL
Globlulin
2
1.6
2.3
2.3
2.5
2.4
1.9-3.7
g/dL
Albumin/Globulin Ratio
1.9
2.3
1.7
1.9
1.8
1.8
1.0-2.5
(calc)
Bilirubin total
0.3
0.4
0.3
0.3
0.3
0.3
0.2-1.2
mg/dL
Alkaline Phosphatase
80
76
56
68
61
54
33-115
U/L
AST
15
15
14
16
17
16
10-30
U/L
ALT
13
12
13
16
14
20
6-29
U/L

CBC
Baseline
May 2
May 30
June 27
July 24
Aug 23
Normal Range
White Blood Cell Count
9.3
3.2
3.1
4.5
5.1
4.3
3.8-10.8
Thousnd/uL
Red Blood Cell Count
4.45
4.5
4.54
4.57
4.79
4.46
3.90-5.10
Million/uL
Hemoglobin
13.1
13.4
13.5
13.4
13.9
12.8
11.7-15.5
g/dL
Hematocrit
38.6
39.8
39.9
39.6
40.8
38.2
35-45
%
MCV
86.7
88.5
87.9
86.5
85.3
85.6
80-100
fL
MCH
29.3
29.7
29.7
29.4
28.9
28.7
27-33
pg
MCHC
33.8
33.5
33.8
34
33.9
33.5
32-36
g/dL
RDW
14.9
16.9
15.6
15.2
15.4
16
11-15
%
Platelet count
183
228
189
248
223
187
140-400
Thousnd/uL
Absolute Neutrophils
4957
2854
2403
2934
3585
3032
1500-7800
cells/uL
Absolute Lymphocytes
3357
112
288
806
806
525
850-3900
cells/uL
Absolute Monocytes
660
205
282
486
393
323
200-3900
cells/uL
Absolute Eosinophil
288
22
112
266
291
387
15-500
cells/uL
Absolute Basophils
37
6
16
9
26
34
0-200
cells/uL
Neutrophils
53.3
89.2
77.5
65.2
70.3
70.5

%
Lymphocytes
36.1
3.5
9.3
17.9
15.8
12.2

%
Monocytes
7.1
6.4
9.1
10.8
7.7
7.5

%
Eosinophils
3.1
0.7
3.6
5.9
5.7
9

%
Basophils
0.4
0.2
0.5
0.2
0.5
0.8

%










Thyroid
Baseline
May 2
May 30
June 27
July 24
Aug 23
Normal Range
TSH
1.45
0.95


1.09

.40-4.50
mU/L
Reflex to T4
n/a
n/a


n/a






T & B Subset
Baseline
May 8
May 30
June 27
July 24
Aug 23
Normal Range
% CD3 (Mature T Cells)

7
97
97
98
19
57-58
%
Absolute CD3+ cells

<20
316
582
643
103
840-3060
cells/uL
% CD4 (Helper Cells)

3
7
13
11
11
30-61
%
Absolute CD4+ cells

<20
23
78
67
59
490-1740
cells/uL
% CD8 (Suppressor T Cells)

3
85
80
82
9
12-42
%
Absolute CD8+ cells

<20
276
480
490
49
180-1170
cells/uL
Helper/Suppressor Ratio

1.1
0.08
0.16
0.14
1.21
.86-5.00

% CD19 (B Cells)

3
2
1
1
45
6-29
%
Absolute CD19+ cells

<20
<20
<20
<20
241
110-660
cells/uL
Absolute Lymphocytes

138
325
599
655
542
850-3900
cells/uL








Vitamins
Baseline
May 2
May 30
June 27
July 24
Aug 23
Normal Range
B-12
939


470
391

200-1100

Folate
12.4


23.8


none

Vitamin D, 25-OH, total
44





30-100

Urine
Baseline
May 8
May 30
June 27
July 24
Aug 23
Normal Range
Glucose

Neg



82.0
65-99

Protein, Total

Neg



6.6
6.1-8.1