ALS comorbidity

jethro

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hi all,
which diseases come mostly together with als (cause/consequence), what changes can occur in a blood in a later als stage, can anything be visible after certain time (later als stage) on a mri/pet ct or so?
thanks
 
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Nikki J

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FTD is the most common comorbidity Of course PALS can have any disease that anyone else has. Blood clots, most dangerously, pulmonary embolism are a complication of immobility also pressure sores. Pneumonia from that and aspiration.
blood markers? I do not believe there are any specific.

inflammation can be seen in some PALS on PET MRI. Sometimes there are suggestions of ALS on high intensity MRI. Neither is used as a progression markers or for diagnosis at this time. Imaging of late stage PALS is not something studied or feasible as most would not be able to tolerate lying flat for an extended time. The full PET MRI is close to 2 hours in the tube with no break as there is preliminary imaging followed by tracer injection while in the tube then the PET is 90 minutes and can not be interrupted. I have done it. It isn’t easy
 

jethro

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PALS
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what they saw on PET? i will go on 21nd may.
um... maybe there are markers for als. protein p75 seems to be a urine (even in mayo didnt use it cause they never heard of it, i talk to them). also, free testosteron seems to be weathercock
 

Nikki J

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Mri pet with a specific tracer shows patches of inflammation.

there aren’t any markers that are used in the US but true p75 and neuro filament are close and may be used there. I have to say though what do the numbers matter once you are diagnosed. All that matters is how you are clinically/ functionally.
 

KimT

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Jethro,

As you know, I do lots of blood work every year and correct deficiencies/excesses as best I can. I had a high free copper when I was first diagnosed but Gluzin brought it back to normal. I've seen research on creatinine and albumin used as progression markers since one can be low when muscle mass is lost and the other can be low when inflammation is present. I've talked to some PALS who are convinced that high Ferritin levels are present in many PALS. Mine is low so go figure.

Last year my TSH went up once again. I took some iodine supplements and it's back down. Hashimoto's is hard to manage but I knew my TSH was high because I was tired and I started losing hair. Now my hair is thick again, thanks to correcting the TSH and taking collagen peptides.

I eat a diet very high in anti-inflammatory food. Does it help? I don't know but I'm not stopping.
 

Don

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Dec 24, 2019
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PALS
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Hi Jethro, there probably is no link to ALS but I got shingles 8 months after diagnosis. There is a new vaccine now and I would check with your doctor to see if it would be good for you. Shingles was very painful for many months. That coupled with my ALS was an experience I hope no one else has to deal with.
 
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