ALS or something like it

[joshp]

Hello,

First off, I'm extremely sorry for your suffering and diagnosis of als. I hope you find peace and hope in this journey. Praying for you all. I am a 49 year male. Been active and healthy all my life with no real health issues.

The last 13 months it's been hell on earth.

I have been dealing with a host of symptoms for over a year which are progressing. I woke up one day in Oct of 2022 feeling extremely tired and noticed I slept 10hr which was not like me and felt very tired. My mouth was open and cry dry which was not my normal when sleeping. This led to a a progression of a host of symptoms which I will list below. I had 3 EMGs, no bulbar ones, which were negative in last 9 months. MRI, lumbar puncture blood work which was all clean except for low ldh, and most recently AST went from a consistsnt 16 to 41.

I will also mention thst I went to one of this lyme literate drs and did igenix and Galaxy labs which said I was postive for borrelia, equivocal for bartonella and babesia which i went on a course of antibiotics for 3 months with no improvement. Basically from Sept to Dec of 2023. I figured I'd see if that would work because I had no diagnosis and was told it could be tick borne.

Below are the symtoms I've experienced and although, I can walk, run ok, go on my tip toes, heel walk, do most things. Don't have any clinical failures, I'm loosing muscle I'm hands legs arms back. My legs shake going down stairs. My arms shake on when doing like a negative curl. Started in left arm. Now in both arms. Below are a list of symtoms I've been experiencing. I have 2 small kids and it's destroying me in the process. Please help with any insight with these symptoms. I will be seeing a Dr at Columbia pres. In NYC end of January for a second opinion because my yales neurologist isn't sure what's going on. I have no hyperreflexia in both legs and arms.

Thanks so much for the help list of symtoms Below:

Left hand pinky cant extend pinky upright,
Stiffness and slowness
Feel off balance
Muscle weakness throughout body, shaky
Muscle mass decreased
Muscles twitching throughout the body comes and goes.
Hand strength weakening, pincher fingers weaker less hand bulk
Shakes and tremors hands,arms and legs.
Ratchet like arm amd legs movements at flexion
Difficult swallowing that comes and goes
Feel winded, shallow breathing sometimes
Muscle contractions and quivers
Clicking in ear, like in internal twitch with pressure like pain comes and goes
Increase in migraines and headaches
Overactive reflex like reactions
Weaker vision, blurriness that comes and goes, almost like a pixelated vision, floaters and light sensitivity, halo aound lights
Constipation
Crying easily
Voice is weakened
Sometimes talking feels exhausting
Burning Muscle pains that come and go
Feel like a paranoid disoriented feeling
Heart palpitations and easily tired
Exercise intolerance
Nerve sensations, tingling sensation in my nose comes and goes
Decline in Executive function
Severely depressed
Memory issues
Heat and cold intolerance
Neck pain and stiffness comes and goes, feels like a pinched nerve
Jaw jerk, quivers when get little anxious or cold
Fingers and toes ice cold numbness,circulation numbness especially when sleeping or in fixed position
loosing dexterity a little
Eyes feel slow movement sometimes
Mild Sleep apnea
facial twitches, twitches on riggt side when smile
Poor posture, feel hunched over
Panic attacks
Low blood pressure
Sensation of ants crawling on scalp
Feel off balance but can walk and run ok
Can't whistle on inhale like I used too
Cant sing or laugh like I used to.. even smiling feels different
Stabbing muscle pains tightness
Tightness in hips
Hyperreflexia
Brisk reflexes

Thank yoy for your time and help

Josh

 

[lgelb]

Hey, Josh, are you taking any medications, doing drugs, or drinking more than usual? The crawling feeling and much else of what you mention can relate to these, along with basics that need work like nutrition, hydration, sleep. Have you been prescribed a CPAP for the sleep apnea?

That all this goes back to an undiagnosed virus (NOT Lyme, which is a bacterium) is certainly a possibility.

Lyme abx esp. in a heavy-duty regimen such as an LLMD might prescribe, have their own side effects, so I'm glad you finished those. Strongly advise kicking the LLMD to the curb. It's dangerous quackery. You may want to follow up with an allopathic infectious disease specialist to close the loop with labs.

When I read "panic attacks" and "severely depressed," neither of which are features of ALS onset, I'm thinking that counseling could be a good starting point, while waiting for the Colombia appointment, to sort out what's more physical and what's less so. A lot of your list tends to feed on itself and multiply, but I see no reason to think of ALS. I would also advise attention to the areas above in conjunction with your PCP.

I accept that you are accustomed to good health and this is frightening. Just remember that "hell on earth" (no stranger to many of our P/CALS here) is almost always in part a creature of your own mind, and most laundry-list sudden-onset situations have at least one near-term solution.

 

[joshp]

Thanks so much. And so sorry for all the pain. And suffering we all endure

 

[joshp]

Hello,

My prayers are with all that are here. Wishing peace and healing.

I recently had neurofilament light chain plasm checked with Mayo Clinic and was normal for my age at 49 and was 8.25. I noticed that labcorp seems to have lower threshold or different measurement sensitivity. Is Mayo clinic lab nfl plasm test as accurate as labcorp? It seems they have different reference ranges...

Thank you for you help and God bkess

 

[lgelb]

Different labs have different reference ranges esp. for newer tests. Use the range of the lab that processed the sample.

 

[joshp]

Hhello, I recently had a labcorp serum amd mayo clinic plasm nfl. Both normal. I knlw this is non specific, but would normal results take als off the list of possibilities. Thanks for any insight

 

[Nikki J]

3 negative emgs and no clear failure plus you were going to Columbia last month and you don’t mention it so guessing they did not say ALS. Those things already take ALS off the table. 2 normal nfls are just icing on the cake