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.