Presentation....Told Post-viral, Lots of ALS Symptoms

[anamat]

Hello,

I would appreciate any insight from people within this forum. At the end of Sept/beginning of Oct, I had the worst gastrointestinal virus of my life (seven days of severe diarrhea and no eating). The following week, I began to notice weakness in my right hand and arm while working on the computer. Within a day, I noticed that the recognized weakness was actually in all my limbs and I had extreme fatigue. I also had difficulty breathing (possibly anxiety..who knows). This progressed over the following week when I was able to see a Neuro. He did Nerve Conduction Study, EMG and MRI...all normal. He diagnosed me with post-viral. The following week, my PCP did blood tests and referred me to a MS Specialist, b/c she thought further testing needed to be done. The MS Neuro did several more MRI's, evoked potentials, etc and ruled out MS and MG. During thost first two weeks following my virus I had an acute onset of symptoms to include: limb weakness (arms, hands, and legs), dizziness, tremors, brain fog, vision issues, sensitivity to light and sounds, fatigue, tingling, burning feet, some (limited) numbness, feeling like throat was closing in, temp sensitivity, temp regulation issues (cold feet), stress reaction, and more. All of these came on very quickly; from what I can recall, I don't remember having any of these prior to the virus. I saw my neuro last week for a follow-up. He repeated the NCV and EMG....both normal. When I read through the websites with info on ALS, I've had every symptoms (some bulbar and lots of limb). My doctor told me that my "presentation" did not align with ALS b/c of the sudden onset immediately following a virus with the involvement of many body parts and systems. He said he is sticking with his initial diagnosis of post-viral. He thinks I should also see an infectious disease specialist to rule out some other things. This is week #5....most of the symptoms have resolved apart from the limb weakness (better or worse depending on how much sleep I get and how much I exert myself the day before), tremors that I feel at night, occassional fatigue, and throat issues. Oh ya, I was diagnosed with a severe allergy related sinus infection and swollen tonsils two weeks ago....which my doc says is why I feel like my throat is closing in and it makes talking for long periods of time hard. From my understanding of Post-viral, though, is that it can cause all sorts of issues to include neuro, circulatory, endocrine, and pharnyx.

I respect my doctor's opinion, but would still like additional insight from people on this forum about their presentation. I know many expressed that ALS "snuck" up on them. Did it present this quickly? following virus? Bulbar and mult-limb involvement immediately?

I am a 29-year-old mother of two. Any insight is greatly appreciated, so that I know whether or not I should be seeking additional opinions from other neuros.

 

[GlenBrittle]

Its simple.

Once you become weak with ALS it never gets better.
It doesnt just start up like your symptoms did , it sneaks up on you slowly.

You do not have ALS.

Glen

 

[BethU]

Sounds nothing like ALS onset. That's quite a leap from that presentation to ALS.

Hope you feel better soon.

 

[anamat]

Beth and Glen,

Thank you for your insight. I understand what you are saying and am quickly learning that etiology and progression is just as important as the list of symptoms. The internet can of course aid in our medical exploration, but can also greatly hinder. When I look at the ALS symptoms listed and progression, I feel like mine align. For example, mine started in my right hand...but of course, quickly progressed to were I could say within a few days that it was actually "limb weakness" that I had just noticed in my right hand first. In addition, the weakness was also accompanied by what felt like aching or cramping (not hard cramps, more irritaing aches), some twitching (very little and most has subsided), some morning stiffness, and irritation in joint areas like the ankles, wrists, etc. When you read about ALS, all of these are mentioned. What isn't mentioned, though, is the typical progression of early symptoms...meaning does this happen within a week (like mine) or over months, years, etc. Furthermore, both bulbar and limb weakness are listed as early symptoms. Again, though, it's hard to decipher if these co-exist immediately from the get go or how quickly the progression is. Anyhow, I am appreciative of your insight. I have good and bad days...when I am particularly weak or can't breathe well, ALS uncertainties always resurface. I did FINALLY this week print out the list of post-viral symptoms/ME/CFS; from review, my onset, progression, and myrid of symptoms appear to align more closely with PVS. Thank you for taking the time to respond to my post and other posts; insight from people on this forum is very valuable, as doctors are sometimes vague and just merely reading a list of symptoms can be misleading.

 

[trfogey]

Listen to your neuro, not Dr. Google. Dr. Google has never seen you or touched you. Dr. Google has never read your MRI, nor has he seen the results of your EMG. Dr. Google has an awful bedside manner because he never really has all the facts about you before he gives you his opinion, yet he overwhelms you with tons of unfiltered information and expects you to be able to figure out what applies to your situation and what doesn't.

If Dr. Google was a flesh and blood doctor, you wouldn't like him very much. Why do you keep going back for his lousy service now?

 

[Zaphoon]

I'd just like to echo the comments others have posted for you. ALS onset is referred to as being insidious. It is at work, doing its damage with you being totally unaware. Symptoms start in one area of the body and then slowly spread over a period of months, not weeks or days.

It seems to me after looking at how rapidly your symptoms developed, that you have something other than ALS but I am no doctor.

Zaphoon

 

[rose]

........He thinks I should also see an infectious disease specialist to rule out some other things. This is week #5....

I respect my doctor's opinion, but would still like additional insight from people on this forum about their presentation...... Any insight is greatly appreciated, so that I know whether or not I should be seeking additional opinions from other neuros.

I can only echo what was already expressed here. My question is, have you taken your doctor's advise and gotten scheduled to see that infectious disease specialist? I would heartily recommend doing just that. It is very true that not only post viral, but autoimmune can infiltrate the nervous system. It is such a more likely cause, and you would be doing yourself as well as your family a great disservice if you would disregard a treatable condition.

I know it is easier for me to write this, than for you to do it, but don't let this fear of ALS consume you, taking your focus away from those who love and depend on you.

The very best of luck in finding definitive answers, and getting back to your old self again.

 

[fec139]

Don't talk yourself into having ALS. Just thank your higher power and supreme being that you DON'T have it because it is a lousy disease. Feel better soon.:lol:

 

[edspec77]

Hello,
I am Anamat (made this original post). For some reason, when I went to login, though, this profile popped up on my computer (edspec77); thus, that is now who I am (must have used that profile at some point to view forum). Anyhow, I wanted to provide an update, b/c I promised myself in the beginning that when I figured out what was actually wrong and/or recovered I would go back and post to all forums that I made inquires, so that others with the same issues in the future would know my outcome.
After my post in November, things continued to be bad (at times I thought I was getting better, only to find myself far worse). The weak/dragging limb feeling (especially arms) was a constant during December-January. I still had many other neurological and immunological symptoms. I was closely followed by the same neuro from the onset and sent out to other neuro for second and third opinions. In mid-January, I spent a week at the Mayo clinic under the supervision of a neurologist specializing in neuroimmunology. I underwent all of the same neuro exams and tests again (head to toe EMG, MRI’s, etc), had many more tests (EKG, halter, etc) and appointments with other types of doctors, and loads of bloodwork. There conclusion aligned with that of my neurologist that had been following me since the onset: Post-Viral Fatigue Syndrome, with no evidence of any type of neurological disease process. There prognosis was that I would make a gradual recovery over the next 9 months. I’m almost at month 8 now (since the onset in October following a bad GI virus) and I can say with confidence that I am getting better. It is not an automatic process by any means….but a gradual recovery. I have read so many stories from the undiagnosed on this forum that really remind me of my very own issues, which is why I am sharing. Viruses (even something as simple as the common cold) can cause unexplained neurological symptoms that do resolve with time. For some, it takes years to recover. Mayo offered some insightful information…they have a lot of people come through their doors with unexplained neuro symptoms that mimic neuro diseases; yet, when they do the exams and run the tests (MRI’s, EMG’s, etc), everything is normal. They find this frequently in the weeks following some sort of illness or virus. Many of these people make a full recovery with time, despite never receiving any firm diagnosis apart from being told they have some type of “syndrome”. I am by no means symptom free…I still have random twitches, my right foot still buzzes periodically, my limbs get the occasional “funky weak” feeling……but I can now run almost 45-60 minutes a day with ease. I could not have done that during the first four months of my illness. I’m not sharing this to brag about my recovery, but instead just want people on here seeking answers to understand that neurological symptoms (twitching, weakness, cognition issues, etc) can occur apart from a disease process like MS, ALS, etc.
Another thing I’ve learned the hard way….the internet is full of lists of symptoms; yet the “internet” does not do a very good job explaining the etiology, so it is very easy to jump to conclusions merely by looking at these lists, w/o fully understanding the actual condition. If you’ve been diligent to see neurologists and have the necessary tests performed….trust your doctors. Wright speaks up in many posts about clean EMG’s….they basically are indicative that you do not have ALS. Despite all of the normal exams, clean EMG’s, and more….I would continue to question my doctors. This was not healthy.
I hope in some way this will help others. Thanks to all of the courageous PALS that are willing to unselfishly devote their time to encouraging and helping others find answers.

 

[AndyDJX]

Thanks for sharing your story, and don't worry about being perceived as "bragging about recovery." It's great to hear that you are getting better, and there's plenty of wisdom that other people should be able to draw from your story. I hope you continue on the path to full recovery.

 

[lararobin]

I recommend getting your ID Specialist to check you for West Nile Virus. This can cause the symptoms you are describing.