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Aug 1, 2018
Learn about ALS
Age: Turning 22

Height: 5'11"

Weight: 147lb, lost 23lb in last 3 months but not entirely sure why, could be just eating less or something less, not sure

Gender: Male

Medications: No

Smoking/Drinking: No

Pervious illness: None really, I never got sick other than the "common cold"

Duration: 3 months now

Diet: Vegetarian

This is how all this started. With Flu-like symptoms 3 months ago. I posted it over here, this is when my heart started beating rapid upon exertion, and the muscle twitching began. I believe the muscle twitching began roughly a week after my initial symptoms:

For almost 3 months I feel muscles twitching over my body. They're not going on 24/7, but like hundreds of times a day. I don't keep count of them. These muscle twitches are mostly in my legs, calves, abdomen and chest area, rarely in my arms. They are not coming in the same location, but different location, and come 1 at a time, usually. Not really sure what a muscle cramp is but I did not have those I believe. I used to be very fit, doing intense exercise 5 times a week BEFORE May. And I used to drink alot of protein supplements with BCAAs, and glutamine. I have read about both of their connection to ALS. I can still talk normal I think. Walking up or down stairs is somewhat difficult for me, it feels like my leg muscles are stiffer and have to work harder. Very recently I also feel like my leg muscles have to work harder just to stand. Not sure if that is true, but that is what I feel, especially the upper quad muscles. Also my back posture has curved, compared to before. I am also producing mucus on almost everyday for the last 3 months. And as I mention I did lose alot of weight, 25 pounds in 3 months. Not sure if this was do to having stopped exercising, or just eating less, or something else.

*important. recently I feel like I have a strong urge to stretch my legs (if sitting on a chair), to release the "stiffness". I also have muscle pains over my body. If I apply pressure the pain eases, but it feel kinda of like a burning sensation. Like if I gently rub/massage the affected painful muscle, the pain eases.

I also have to get up to urinate 1-2 times every-night, for the last 3 months. I never had this problem before. And I feel my urine has discolored to a green-ish shade.

For 3 months, little exertion causes my heart to beat rapidly. Before all this I was doing intense exercise fine. For example, walking up a stair with 10 steps, makes my heart beat at 120 BPM, and it usually starts at 80 BPM at the bottom of the stairs. When I am walking outside in somewhat sunny weather, my heart is beating at 110-120 BPM, when I am ONLY walking. Not sure if this is normal. Right now, doing a little physical intensive work, such as climbing a flight of stairs or walking for a while at a medium pace... its makes me short of breath. And I am always feeling for the last couple months, that I can not get a full breath in like I once used to. I am also unable to yawn properly. My blood pressure is also usually elevated when checked, around 142/80. From my understanding, before all this it was perfectly normal, at 120/80. However as of very recently my Blood pressure has came down again, according to my understanding.

Black vessels on palm and fingers (was extremely difficult to get it to show on camera, but it is visible in person): And: They are like this but on every finger, I never saw them before in my life.... no one else in my family has them. And when i press on them they disappear.

And picture of vessels near bottom of palm:

Iron: 9 umol/L (range 11-34) LOW

Transferrin: 2.89 g/L (range 2-3.3)

TIBC: 73 (range 50-83)

Transferrin Saturation: 0.12 (range 0.13-0.5) LOW

Vitamin D, 25-Hydroxyvitamin D: 66 nmol/L (range 75-250)

My iron and Vitamin D is low, however my B12 is extremely high.

B12: 1437 pmol/L (range 200-600).

Doctors are telling me they don't know why my B12 is high.

Other than Iron and vitamin D, my vitamins for bone are within the normal range.

Calcium is 2.43 (range 2.2-2.6). Phosphate is 1.02 (range 0.87-1.52). My ALK PHOS now is normal, but measure during the early period of my illness (early May) was a bit higher than the normal range. However, I did not have the specific isoenzymes measured for ALK PHOS when it was high (bone, liver). Other thing I notice is my WBC are slightly high at 10-11 for almost 3 months. As you can view the other labs below, I have no idea why my WBC have been high for 3 months hovering around 10-11. With mostly the neutrophils beings high.

My LDH isoenzymes was just measured on July 16. Total LDH was 148 U/L (range 110-230). LDH isoenzyme 1 was 23% (range 16-32%). LDH isoenzyme 2 was 28% (range 23-39%). LDH isoenzyme 3 was 22% (range 21-29%). LDH isoenzyme 4 was 11% (range 6-12%). LDH isoenzyme 5 was 16% (range 3-17%). Ratio of LDH isoenzymes 1 and 2 was 0.8 (range <1). However, LDH isoenzyme 5 was greater than 4, which usually it is not supposed to be. I believe LDH 5 is for the skeletal muscles, and if they are breaking down its higher.

Now important blood work, I had it done 7 times at the exact same lab, with the same equipment. The 7 dates I had it done were: May 8, May 18, June 8, June 13, June 17, June 30, and, lastly, July 16. Please use these for reference. I will separate each result with a hyphen, starting with the earliest date, to July 16 at the end.

WHITE BLOOD CELL COUNT (range 3.2 - 9.4 X 10*9/L): 10.6-11.2-9.8-10.7-7.7-8.9-11.1

WBC differential, absolute counts...

WBC MONOCYTES (range 0.2 - 0.8 X 10*9/L): 1.0-0.7-0.9-1.0-0.7-0.6-0.8

WBC NEUTROPHILS (range 1.4 - 6.3 x 10*9/L): 6.1-8.0-5.9-6.8-4.9-6.0-8.2

WBC LYMPHOCYTES (range 1 - 2.9 X 10*9/L): 2.1-1.9-2.5-2.5-1.8-2.0-1.9

WBC EOSINOPHILS (range 0 - 0.5 X 10*9/L): 1.1-0.3-0.4-0.2-0.1-0.2-0.0

WBC BASOPHILS (range 0 - 0.09 x 10*9/L): 0.0-0.0-0.0-0.0-0.0-0.0-0.0

General Blood:

HEMATOCRIT (range 0.39 - 0.49 L/L): 0.47-0.46-0.46-0.46-0.47-0.46-0.44

HEMOGLOBIN (range 129 - 165): 153-151-149-148-153-147-146

MEAN CELL HEMOGLOBIN (range 24 - 33): 29-29-29-29-29-29-29

MEAN CELL HEMOGLOBIN CONCENTRATION (range 313 - 344): 327-329-323-322-329-318-332

PLATELET COUNT (range 155 - 372): 348-314-311-303-304-268-289

RED BLOOD CELL COUNT (range 4.2 - 5.8 x 10*12/L): 5.2-5.2-5.3-5.2-5.3-5.1-5.0

MEAN CELL VOLUME (MCV) (range 80 - 98): 89-88-88-89-88-90-89

RBC DISTRIBUTION WIDTH (range 12.5 - 17.3 %): 13.9-14.0-14.0-14.2-13.9-14.2-14.2

MEAN PLATELET VOLUME (range 4 - 14 FL): 7.6-7.9-7.8-8.1-8.0-7.9-7.8

Other important blood work:

Measured June 17, my LDH was 156 U/L (range 110-215).

Measured July 16, Total LDH was 148 U/L (range 110-230). LDH isoenzyme 1 was 23% (range 16-32%). LDH isoenzyme 2 was 28% (range 23-39%). LDH isoenzyme 3 was 22% (range 21-29%). LDH isoenzyme 4 was 11% (range 6-12%). LDH isoenzyme 5 was 16% (range 3-17%). Ratio of LDH isoenzymes 1 and 2 was 0.8 (range <1). However, LDH isoenzyme 5 was greater than 4, which usually it is not supposed to be.

Vitamin B12 was 1437 pmol/L (range 200-600). Doctors I see are telling me they don't know why my B12 is so high. I don't take supplements, and am a vegetarian.

My TSH is normal, 1.33. Sodium is 140 (range 135-147). Potassium 4.3 (range 3.5-5). Chloride is 100 (range 95-107). CO2 is 28 (range 22-30). Anion gap is 12. Calcium is 2.43 (range 2.2-2.6). Phosphate is 1.02 (range 0.87-1.52). Albumin is 48 (range 35-50). Total CK is 79 (range <195). CRP is 3.2 (range <8). Creatinine is 74 (range 44-106). Glucose is 5.3 (range 4-8). AST is 16 (range 5-34). Bilirubin is 9 (range <22). ALK PHOS is 113 (range 40-130). Lipase is 17 (range <60). INR is 1.0 (range 0.9-1.3). Amylase is 66 (range 30-110). Cortisol random is 447 (range 65-540). Sedimentation rate ESR is 9 mm/hr (range 0-15). From my protein electrophoresis test: "Normal serum protein electrophoresis pattern, no apparent monoclonal band seen". I did NOT have a blood smear yet, all my tests were done through machines.

: i had a normal abdomen ultrasound, expect kidneys were larger. Dimensions of right kidney were: 9.9×4.7×4.9cm; and 9×4.3×4.5cm for left. Also for my biliary tree, the CBD measured at 2.3mm. And I had a normal heart echocardiogram.

Urinalysis: Normal. Clear, and normal color. Neg bilirubin, neg blood, neg glucose, neg ketones, neg LEUKOCYTES, neg nitrites, neg protein, UROBILINOGEN is 3.2 on every urinalysis i did (range 3.2-16)... which is unusual because everytime it borders the lower limit of 3.2. I also have no signs of parasites in my stool, according to test.

*my body temperature is also relatively normal. 37.1 c/ 98.6f
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In that MASSIVE wall of text, the thing I think you thought connected your concerns to ALS is twitching?

Please read here:

If you would like further feedback, please write a short post with specific questions you wish to ask. We have members here with limited to no use of their hands and use adaptive techniques that makes it extremely laborious to read such a huge volume of text. Dumping your lab results here is not helpful unless there is something specific you wish to ask about about a particular result. I may have missed it in all that, but did you bring your specific concerns to a doctor and what did they say?
Likewise, I see no link to ALS but would suggest you find a primary care physician who can address this with you.

Sorry about the large text.

Mainly I am concerned with ALS because of weakness in my legs, rapid heart rate upon excretion, and also twitching all over my body.
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I trust you read the linked post now? So you know twitching is meaningless, your leg symptoms are perceived weakness not actual clinical weakness - that is feeling no failing.

The heart rate issue is not an ALS symptom.

I assume you saw at least one doctor given all the results you posted. Please follow up with him/ her/them. You are not describing ALS
I just did some tests and I can stand on my toes, i can stand on 1 leg, i can get out of a chair using only 1 leg, i can hop stairs with both feet planted. Not sure on the validity of these tests, but some ALS websites had these as some form of diagnosis weakness..

Can I completely rule out ALS?
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You are asking people about things addressed in the "READ BEFORE POSTING". Please read it again to assure yourself. Then go back to your doctor and talk to them about what your symptoms may indicate.
I completely understand. Essentially i been experiencing shortness of breath, along with the muscle twitching, and i 'feel' my legs have gotten weaker. Climbing up and down stairs is more difficult. And my anion gap is progressing upwards, was 8 now is 12
There's no ALS in anything you wrote. See your family doc for advice.
Thank you sir. Should I push forward for a EMG and neurologist visit, or you think that is unnecessary
Just ask your family medical doctor, a general practice primary care doctor, to help you with your feelings of shortness of breath.

Print your first post, that giant wall of text and show it to the doc.

But while you are waiting for the appointment ask yourself this question: What changed? Did something change 3 months ago? Are expecting a change soon? Did you start the diet then? Changes in family life? School? Girlfriend? Relatives? Death of a friend?

Let the doc figure it out. You'll be fine.
A reminder.

We offer the website, ALS Forums, for people who have ALS and their caregivers.

We offer the subforum titled "Do I Have ALS" for those people worried they might have ALS.

ALS is a unique disease for several reasons. For one thing, taking care of a person with ALS is often counter-intuitive--you might think that "give oxygen" would be a helpful bit of advice, but, in fact, there are conditions which make it the worst advice of all. Also, many people might say that if a muscle is weak, exercise it "use it or lose it" advice, but, in fact, there are conditions which makes that the worst advice to give someone with ALS.

So it is important that people who do not understand ALS, people who don't have ALS, should not be giving advice on this website. Their advice can be fatal!

For that reason and more, we must insist that people who are not diagnosed with ALS must not post outside their own thread, and that thread must be in the Do I Have ALS" subforum. Persons without ALS must not post on other people's threads.
From those knowledgeable in this disease ALS, i 100% do not have it right? Cause i been getting msgs here from other users and am getting worried :(
Just really disappointed because i am not getting a neurologist appointment for months here in Toronto Canada
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