ALS The Long and Winding Road

“You have ALS…”

Yes devastating to hear, but how did you get here? Where on your body did it first manifest? When did it introduce itself? How long from onset did it take to get diagnosed?

Most of the public, who are mostly unaware of ALS, know even less of the painful journey to “you have ALS”.

From months up to two years is the average timeframe it takes to be diagnosed. But isn’t there a blood test, scan or exam that can tell you?

No…no, and no!

Well at least there’s treatments and aren’t they close to finding a cure!?

Eh, no…and no! There is nothing to stop or slow it down. How can I put this delicately…the only cure is death. If you didn’t know, well now you do.

So what does it take to get a diagnosis? Here is the laundry list:
Referral to a Neurologist
They can and usually run blood tests, standard, heavy metals, Lyme disease, environmental and industrial toxins.
Exposure or long term use of medications, supplements etc…
CT Scan, MRI, x-rays
Electromyologram (EMG) nerve conduction test.
Nerve biopsy

All of the above are typical, what I didn’t share are the sleep if tests, scans and referrals to other specialist along the way, to rule out all the other conditions. Conditions that mimic, parallel or present similar to ALS.

My journey took almost two years, one possible neck surgery, three neurologist and so on.

What would you do waiting to get answers to what is destroying your body. Wait patiently, put all your faith in the specialists, or loose your mind and get angrier by the day. Becoming increasingly frustrated at getting poked and prodded without answers. Oh and if it weren’t bad enough the average prognosis is 2-5 years. You’ve just lost two years of ALS life just getting the diagnosis.


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