25 and Scared of ALS with unusual symptoms

[MichaelPas]

​

I have been experiencing symptoms for almost 9 months. It started with visual changes then head aches. There was a bright flash that stayed for weeks and only slightly resolved. I see flickering and flashed and cant look at anything that has repeating patterns or thigns like grass and carpet. I have seen opth and neuro optho. No answers. Then the twitching progressed starting as mycolonus then to fasciculation's all over my whole body. At the time when this all started I began to be very sick numbness burning through out my nbody extreme weight loss night sweats. Cognitive issues. I have seen Neuro in my home town and two at Columbia. I have ad two emgs both clean. Latley I have been treating for lyme and havent see any improvements except my nght sweats have seized. The neuros found hyper reflexes and clonus in both ankles. No babinksi response. and fasciculations Everyone is stumped. I have extremely hyper active reflexes, twitching of my tongue. Most recently I can feel my left hand getting weaker and can see muscle atrophy in my palm under nethe my pink. I also have atrophy in my left tricep. . I have all ALS symptoms plus lyme symptoms. Muscle pain neck pain head aches vision disturbance (floaters, waves, light sensitivity) random chest pains slight drop on my right eye clonus in both ankels numbness on my left leg( comes and goes) pins and needles all over Burning in my spine joint pain legs and arms fall asleep so often (mored so when im sleeping I have to wake up and shake it out) memory issues extreme stiffness in all joints rigid movements hearing sensitively and ringing twitching every where all the time dizziness weight loss burning spine awful balance hand tremors vibrating I have been tested 3-4 times. Positive ELISA test every time negative western blot with a positive 41 band. I am worried that my lyme is just ALS. Or I have both at the same time. It plagues my thoughts. Especially since the muscle wasting in my hand has started. I have gone to every specialist you can imagine. I feel so alone and I just want help. I am hopefully starting IV rocephin by the end of September but isn't covered by insurance. I am losing hope can someone please give me some words of wisdom anything that can help me PLEASE. DRS I have seen 3 neuros rheum Gastro Onco Hemo and spent a week in Albany med Not one person can give me any answer or diagnosis I cant work because of how debilitated I am and I was just getting ready to move out. I dont know what to do or what is happening to me. I am sorry this is written so strange I have trouble gathering my thoughts and putting them in an organized manner since becoming sick. I am not try to offend anyone with this post either if you think i am I am sorry and will delete. I dont want anyone to think I am abusing this forum or website.​

I

 

[affected]

Sure ain't ALS.

 

[lgelb]

If someone legitimate is treating your Lyme and the Rocephin is medically indicated, it should be covered by insurance.

Studies have found no connection between Lyme and ALS, other than fear. Your issues do not resemble ALS at all. If you have an infection requiring IV antibiotics, that should be your top priority, and treating it effectively could greatly improve your health. But Lyme is controversial, the lab tests (positive and negative) are not all that, since they measure antibodies, not bacteria, and so I would get a second opinion on any treatment plan, from a "traditional" infectious disease specialist, of which there are many in NY, not an "LLMD."

Best,
Laurie

 

[Clearwater AL]

As "Affected" " wrote.... "sure ain't ALS."

Being you seem to like lists, here's one you can take your pick from if you now believe
it may be neurological....

Anxiety
Myasthenia Gravis.
Multifocal Motor Neuropathy.
The Parsonage–Turner syndrome.
Spinobulbar Muscular Atrophy, or Kennedy's Disease.
Demyelinating Syndrome
Asymmetrical Spinal Muscular Atrophy.
Cervical Polyradiculopathy.
Facial-onset Motor Neuropathy.
Hereditary Spastic Paraparesis.
Primary Progressive Multiple Sclerosis.
Metabolic Myelopathies.
Corticobasal Degeneration.
Cervical Myeloradiculopathy.
Multiple Sclerosis.
Carpel Tunnel Syndrome.
Benign Fasciculations.

But I'll say... it sure ain't ALS.

Of the three Neurologists you have seen and two clean EMGs.... again, it sure ain't ALS.

No need to be here.... keep working with your doctors.

 

[Nanders]

Hello Michael,
I'm so sorry that you're going thru all of that. It's very scary, frustrating and a long process to get answers. I agree with the others, that it's not ALS. I was just diagnosed earlier this week with Psuedo Bulbar ALS that I've apparently had for 2 or so years..I've had autoimmune issues that I thought were the reasons for symptoms.
I've spent the last 9 months having all the "ALS & ruling out tests" by 2 neuros and a neuromuscular disease specialist.
So I encourage you to find a good infectious disease & neuromuscular disease specialist....and have them address your symptoms and do the tests needed to rule out the many possibilities other than ALS. I know Lyme disease can be very debilitating, and hope you can get the correct and necessary treatment soon. Fight for it Michael, and find an friend/ family advocate who can when you can't.
I pray you find great Drs, answers and peace soon!

 

[MichaelPas]

If someone legitimate is treating your Lyme and the Rocephin is medically indicated, it should be covered by insurance.

Studies have found no connection between Lyme and ALS, other than fear. Your issues do not resemble ALS at all. If you have an infection requiring IV antibiotics, that should be your top priority, and treating it effectively could greatly improve your health. But Lyme is controversial, the lab tests (positive and negative) are not all that, since they measure antibodies, not bacteria, and so I would get a second opinion on any treatment plan, from a "traditional" infectious disease specialist, of which there are many in NY, not an "LLMD."

Best,
Laurie

Sorry for just replying. I have not had a postive test for lyme. Only the Elisa test which is the weekest test. I understand alot of my symptoms dont sound like ALS. BUT alot of them do. Twitiching of body and tongue, clonus hyperreflexia, atrophy in one arm and hand. I am worried that I am experiencing something at the same time as ALS maybe lyme maybe some other mystery disease. I am worried I am sorry I am not trying to be disrespectful just looking for answers. I have stumped 10 doctors at this point and no where else to go

 

[KarenNWendyn]

What is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.

Clonus and hyperreflexia are not specific to ALS. Even if you have a few symptoms in common with ALS, it’s not ALS unless you meet the criteria I’ve outlined. And with the two clean EMGs, fortunately you don’t.

Obviously you have something going on, but it’s not ALS. This is an ALS forum, and we’re not in a position to diagnose your non-ALS condition. Keep working with your doctors, and I hope you get answers soon. But there’s really not much more we can tell you here.

 

[affected]

Definitely as Karen says, it is the big picture and that clinical weakness is the central part of that picture.
You are cherry picking symptoms and trying to make them fit to create the picture you think they should create.
Sadly with ALS, we do the opposite - we try to find all kinds of gentler pictures but the symptoms of an actual PALS fit criteria and that's that.

I hope your doctors can solve things with you soon, it must be frustrating with all of those sensory issues happening and no answers yet.