There are various little aggravating things that a neurological malady inflicts upon your body; yawning, emotional swings, loose bowels, muscles that don't do as they're told, and frequent, sudden, irrepressible urges to urinate. The urination thing, I've been told, effects women as well as men, and is separate from the other male urination problem related to the prostate gland.
Three times over the last 4 months I've stopped taking my nightly dose of LDN for a couple of days. Each time the result has been the same, the sudden, frequent, irrepressible urges have returned with a vengeance.
Returning to the nightly dose normalizes things within a day or two.
As far as the other symptoms are concerned I can't say if there is any change... and it really doesn't matter as long as this particular symptom is controlled giving me relief from at least one vexatious problem.
Perhaps the other symptoms will respond over a longer time frame.
Other things I take daily are these supplements; Glutathione, R-Lipoic Acid, and CoQ10,
all of which are alleged to have some beneficial effect as reported by other people with ALS.
All can be ordered online at amazon.com
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Dick,
ReplyDeleteWe have a mutual friend, Rich Haynie and he sent me your blog. I was DX with PLS 10-09 after three years of seeing a neurologist at the UW Medical Center. Symptoms for three years prior to that. One more EMG to see if there is any lower motor neuron involvement (which will be four years). PLS is similar to ALS, but just upper motor neuron involvement. I do take the supplements you show, plus more, but not the LDN and will have a conversation with the doctor. You can get my email from Rich if you wish. Mine has bulbar involvement as well. More privately if you care to lear about PLS, (which is obviously not as dire as ALS. However, I believe I know what you are going through. I wish you all the best, slow progression and a cure soon.
Spoke to my AARNP and Neurologist. They have nothing good to say about LDN and urged me NOT to take it. They are very familiar with it and said they have had patients who suffered because of it. BUT, they are main stream medical professionals, so.........
ReplyDeleteDave