ALS Fears

sunshine44

Senior Member
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Hi,

I wrote in another post how I have declined quite a bit this year due to CFS/lyme and histamine issues, etc. Something that I greatly fear is that this is ALS or something. Does anyone else have this fear?

I have difficult crossing my limbs sometimes (feels like my brain starts vibrating and gets sore) and have great muscle weakness (bedridden) and although it appears to be lyme and cfs…...I get so upset thinking about if its something like that.

I am housebound now and seeing a dr cannot happen till I get a bit stronger. I was last hospitalized in August. I emailed my lyme dr and he thinks its lyme and histamine but said he can't rule anything out.

That made me feel unsettled.

Anyone else with pleasant words about this for my worried mind today?
 
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I've feared a great many health related things at one point, ALS being one during a stretch of time. ALS is extremely rare especially if you are younger. What helped me was reading on a website that mentioned ALS is not about difficulty or weakness doing things, but certain things being just impossible. And time helped of course... I'm sure that doesn't help very much, but I understand your worry and hope you can get past it.
 

sunshine44

Senior Member
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thank you. I am like, well I am declining all year but wih neuro issues and digestive mast cell isues and cfs and head issues, etc.

Thank you for reaching out. Having one of those days where I need to put away these scary fears.

Hard when you are bedridden.
 

Tammy

Senior Member
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Yes..........at one time I was afraid I had ALS due to the muscle weakness, twitching and wasting. My Dad had it which also had me worried in that I thought it was somehow a familial thing and passed down to me. I had a lot of fears at one time that I had all sorts of bad things/diseases. This was almost 20 yrs ago when I had this fear......................and I"m still here with improved health. Sending hugs:hug:
 

Research 1st

Severe ME, POTS & MCAS.
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Hi,

I have difficult crossing my limbs sometimes (feels like my brain starts vibrating and gets sore) and have great muscle weakness (bedridden) and although it appears to be lyme and cfs…...I get so upset thinking about if its something like that.

I am housebound now and seeing a dr cannot happen till I get a bit stronger. I was last hospitalized in August. I emailed my lyme dr and he thinks its lyme and histamine but said he can't rule anything out.

Anyone else with pleasant words about this for my worried mind today?
Hello. In my opinion as a patient, to allay fears of a fatal neurodegenerative disease like ALS you might want to consider seeing a neurological specialist by ambulance if funds allow (what I resort to) or, to get someone to contact them on your behalf and explain your very real concerns. If they ignore you, don't panic and try and find another consultant.

Once you find one, if they think it could be theoretically possible you have ALS or another undiagnosed neurological illness, and by having the test you feel less anxious, they could request an EMG test in hospital or a clinic. I appreciate in your situation this is currently not really on but it might be in time.

An EMG isn't a 'test for ALS', there is no single test, but what it can show is nerve damage e.g. if nerves are sending electrical impulses at the correct speed. Ive had this. It's unpleasant but you can take a light sedative which won't affect the result. It's useful to tolerate the brief pain to know you don't have an issue in this area, at least not with something currently diagnosable.

Also if you havent had one in the last 5 years try and get an 3T MRI brain scan using a modern large bore scanner so it's less claustrophobic as possible. I detest MRI and the wider modern machines help alongside some sedation. Note this will be useless for ME CFS, it's to rule out other causes.

If that is negative or you can't manage it due to illness, cost, travel...

Non specific blood tests for muscle enzyme/cell damage include: CK, LDH, Myoglobin, Aldolase. NB: If the LDH is significantly raised then it can be repeated with an LDH isoenzymes test to check the LDH subset is muscle associated, and not a liver issue or something.

Also if your prime problem is muscle weakness linked to immunity you can get a blood test for MG (Myasthenia Gravis), to look for antibodies to acetylcholine muscle receptors. However, a negative antibody doesn't rule out MG, and a subset of MG with no antibodies exists. Also with this get a MUSK assay (Muscle Specific Kinase autoantibodies).

Lastly, you can obtain more extravagant tests like autoimmune neuropathy related tests that can affect muscle strength. So you'd order a test for neurological antibodies.

The difficulty in your (our) situation as patients who cannot access a hospital is getting the blood drawn when you're in a crisis, I've never achieved this myself as someone housebound as you have to locate, purchase the blood tests, then arrange a home phlebotomy, and even arrange shipping over just days. It all takes outside help and great organisation, so never works out.

All my tests listed above were negative. A relief, but doesn't stop the ME/Lyme making us all suffer so and in very diverse ways.

If you can, try and do whatever you can to be less stressed as stress always makes any illness worse. Hope you feel better soon and definitely ask folk here as you did as although we aren't doctors we all have compassion for others as we know what it's like to be very ill and left to our own devices, which anyone would find anxiety provoking.