Old 01-09-2018, 03:27 PM #1 (permalink)
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Default Questions Regarding Fathers Recent Diagnosis

Hello Everyone,
I hope this is in the correct forum. My dad was recently ( 1/4/18 ) diagnosed with ALS at University of Utah. My mother and I are most likely in denial, however, something just does not seem right from all of the research we have done. I would like to have some insight from those of you who have been through this to see if his symptoms and progression fit the diagnosis.

Up until October of 2017 he was fairly active and really noticed no symptoms. His main issue has been lower back pain which he has had for several years along with and ALIF lumbar fusion performed a few years ago with limited success.

In late September of 2017 my mom noticed a different look in his eyes, a glazed over or glare, almost as if he was drunk. He also complained about "brain fog" and trouble concentrating. This continues to date, however, it seems to have improved.

In early November of 2017 he had an issue in the swimming pool where he accidentally swallowed some water and nearly choked. From this point on he has complained of a sore throat which has resulted in difficulty speaking, and he has trouble swallowing mainly water. In addition breathing on his back was more difficult after the pool issue. He went to the local emergency care and was diagnosed with a sinus infection and placed on medication which did not help the issue. To this date he still has these issues and coughs up yellow mucus.

He went to different doctors who ordered several different blood tests and an MRI all of which were mostly normal, other than elevated Epstein-Barr Virus Antibodys and a reactive Lyme 41 kD (igG).

Toward the end of November he started to become week fairly rapidly in all areas of his body. He is weak in both legs and both arms. He noticed having trouble turning the key to start his truck, difficulty lifting things he had no problem with just a few weeks before, and even problems getting into his truck. In addition, he noticed muscle twitching in all of his limbs. He has also lost ~20lbs since this time, most likely due to loss of appetite.

All of these symptoms appeared very quickly (within 2-3 weeks) and have basically stabilized. In addition to the above he complains of frequent urination, metallic taste, insomnia, dry mouth, blurred vision, excessive sweating during activities, temperature sensitivity, loss of taste/smell, and loss of appetite. He says he feels like he is being poisoned.

We took him to the ER the week after Christmas where the local neuro suspected ALS and referred him to U of U where they agreed after a short exam. An EMG was performed which we were told supported the dx, however, no report was generated.

During the exam he was having trouble moving his eyes without moving his head, until the doc finally held his head still and he barely moved his eyes to look to the side. He did not react to rubbing the hammer on the bottom of his foot like most ALS patients do. He really didn't react at all.

U of U performed no additional tests such as lumbar puncture, blood, urine, etc. They basically just told us its ALS and come back in 6 weeks for a check up.

My issue with this whole thing is how fast and widespread the symptoms appeared. He basically got bullbar, limb and respiratory onset all at the same time to a fairly advanced stage all in about 2-3 weeks, and he has several other symptoms that ALS does not explain.

Has anyone experienced anything like this before?

Thank you for your time.
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Old 01-09-2018, 04:05 PM #2 (permalink)
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Default Re: Questions Regarding Fathers Recent Diagnosis

I agree ALS doesn't spring to mind as top of the list, though it's possible, perhaps with other issues superimposed. The antibodies should have been followed up, possibly with empiric antibiotic or antiviral treatment. Certainly he should see an infectious disease specialist and probably an ENT. Was the pool water tested for toxins and bacteria? Was the reason for swallowing the water weakness or carelessness? Was brain imaging done? Did anyone comment on signs of oxygen deprivation? Did he lose consciousness or stop breathing or turn blue? Were any cultures done in re the "sinus infection?"

You need a second opinion at a neuromuscular center, and the EMG report, all labs, all exam notes, your dad's absolute right to have. We would always advise that anyway, but definitely applies in this case. If you let us know to which metros (Colorado/Cali/OR?) the shortest drive will be (from the map, it's hard to tell), we can recommend some centers to call. If this is all or in part a bacterial or viral infection, both of which seem on the table, time could be pretty important.

Best,
Laurie
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Old 01-09-2018, 04:16 PM #3 (permalink)
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Default Re: Questions Regarding Fathers Recent Diagnosis

Thank you for the reply. The pool water was not tested for toxins, however it is chlorinated well water that is his culinary water also. We have had it tested but the only thing we have found is very high copper content. The reason for swallowing was carelessness at the time (its a small lap pool). The only imaging done was an MRI of the brain which didn't show much beside a sinus disease and some mild atrophy, no imagining of the neck has been completed. He did not lose consciousness during the pool incident and was able to cough the water out on his own.

We were under the impression the U of U was an ALS specialty clinic, or at least they told us they were,

Another item i forgot to mention was that he installed a steam room in his house and started using regularly in September. One theory I had was toxins in the supply water or the heating of the mercury in his mouth could of caused some metal poisoning. He has always been very sensitive to chemicals and toxicity. I know the whole amalgam issue is very controversial, but this was just a thought. As he does have many of the symptoms of mercury toxicity also.
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Old 01-09-2018, 05:56 PM #4 (permalink)
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Default Re: Questions Regarding Fathers Recent Diagnosis

You can request he have a heavy metal screen. That should alleviate your concerns.
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Old 01-09-2018, 06:06 PM #5 (permalink)
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Default Re: Questions Regarding Fathers Recent Diagnosis

Additionally, he should be screened for Wilson's disease.
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