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jimco80

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Hello,

First of all, thank you for those that are diligent to post and answer questions on this forum. It appears that many are very helpful. My thoughts are with those that have been diagnosed and those still searching for answers about their conditions.

Secondly, I do have a few questions, per my recent onset of many symptoms. It all started around four months. It came on very quickly, as I can pinpoint the exact hour that I noticed my first symptom. Although I first noticed in one part of my body (right arm and hand), I noticed within a week that this was much more systemic in nature....impacting all limbs, breathing, dizziness, equilibrium and more.....just a very general odd body feeling overall. I had some sensory symptoms also at first...burning feet, tingling, extreme sensitivity to vibration, etc. AND...the tremors, widespread twitching, and buzzing feeling (in head and body) were very bad at first. As this acutely followed a virus, at first I thought this could be GB. I had a neuro exam with MRI's, NCV, and EMG...all normal, so they ruled out GB and MS. I've been closely followed by my initial neuro for the past four months and my PCP sent me to two other neuro's for second opinions (more MRI's and EMGs...normal). All neuro exams have been normal (normal reflexes, absent babinski, 5+ strength, etc) and they've all reached the same conclusion that this is some type of post-infectious fatigue. I don't feel tired, though, just weak....like my limbs just want to hang there...my doctors call that muscle fatigue! I went to the Mayo Clinic in Minnesota last week hoping to get some answers. They had me start in Neuro, since these sounded a lot like neuro symptoms. They wanted to rule out MND and muscular junction neurological diseases. They did a thorough neuro exam, EMG, and more MRI's...all normal. They sent me through several other departments during my week visit and reached the conclusion that this was NOT a neurological disease, and I should make a full recovery in 3-6 months. Mayo told me that this is quite common actually, and they see this often b/c people present w/ all of these neuro-like symptoms acutely following viruses, yet can't find any answers. My symptoms came on and progresssed so rapidly (all within around 2-3 weeks) and since that point everything has just kind of plateud for the past few months. There were times during the first few months where I felt that I was only a few days away from a wheelchair and my right leg was particularly bad in the beginning...but is normal now. To say the least, this is scary and if I'm recovering, it's been very slow.

Can anyone relate to this acute onset and rapid progression? I'm pretty confident in the opinion of my Neuro's (particularly they Mayo clinic) that this should go away with time, but have read on hear about some of the unfortunate stories of misdiagnosis. It just feels weird to have such weak limbs and yet have no answers and doctors telling you that you aren't weak!

Are the twitches, tremors, and body jerks widespread from the onset or in specific regions (in relationship to weakness, progression, etc). Since mine were widespread, my doctors told me that they were not concerned about them. They've basically gone away...although I do feel occassional body jerks at night. I've had three EMG's...all normal.

Finally, I am posting b/c I know there are several others on here seeking answers and a diagnosis. I wanted to share what my neuro's, including the Mayo clinic, have reiterated....they see these types of things all the time that often mimic neurological disorders, yet aren't. There isn't answers in medicine for everything and some things just end up going away w/o answers...they said they actually see that a lot. I don't know what my future holds or where I'll be in a year (recovered hopefully), but I just wanted to share this insight with others looking for answers for unexplained neurological symptoms.

Thank you to anyone that takes the time to read. For those of you that have been diagnosed with ALS, thank you for your courage, perseverance, and diligence to share. I admire your strength.
 
Thanks for the well written, and informative post. I do think it sounds post viral.. Almost sound like GB syndorme.. I am glad you found us, but hope you continue t improve as time goes on.
 
I have the EXACT symptoms that happened after a bad virus as well. I'm in the middle of tests and my MRI and bloodwork haven't shown anything abnormal. I have an EMG in two weeks. I've been taking Xanax to calm my symptoms down but my doctors have had no sympathy and just keep moving me through the system. Good luck on your recovery and it's quite remarkable that your path and my path brought us to the same place at the same time with these symptoms.
 
Thanks for your feeback hopingforacure. I, too, thought perhaps an atypical case of GB, since i have normal reflexes, though, the doctors aren't even going down that road. I've been evaluated by four neuro's (to include the Mayo Clinic) and all look at me like I'm crazy when I ask if this could be ALS/MND.

Dave Jr., I'm sorry that you are going through this right now. It is so very scary. I can say with certainty that I had no symptoms prior to my virus. My first symptom was very scary for me, b/c at first I thought that it was just my hand....felt like I couldn't grip my mouse, etc. But within a few days, I quickly realized that this "thing" had taken over my entire body and was causing general weakness and fatigue everywhere...to include my face, mouth, etc. I had so many weird symptoms in the beginning....I don't know how many were b/c of my condition or due to the anxiety of what was going on with my body. These odd symptoms included severe perceived limb weakness, difficulty breathing, swollen lymph nodes, tremors, twitches, tingling in limbs (especially when riding in cars), sensitivity to lights and sounds, dizziness, equilibrium issues, brain fog, concentration issues, dry mouth, frequent urination and more! I could not understand how this came on so quickly and moved through my body (bulbar and limb) within two weeks! Now, many of those symptoms have resided, I just feel like I've been left with residual muscle weakness/fatigue. The good news...it hasn't gotten worse. My arms always feel worse, probably b/c I'm constantly picking up my two kiddos (one is 20 lbs and the other 35....they are starting to feel easier to pick up, so I think that means I'm getting stronger, b/c I know they aren't getting lighter)! Even thought it felt like I couldn't grip things tight enough (mouse, steering wheel, etc)....that also is more of a perceived or sensation, b/c I can actually grip very well and the doctors keep telling me that my grip is extremely strong. My body (the whole thing from head to toe) has just felt weird since this all started. So...whatever this is, is causing a lot of "perceived" weakness. Interestingly, I had a co-worker that had post-viral two years ago and speaks of many of the same symptoms (feeling of bad grip, weakness, etc); yet they could not find any neurological explanation. He made a full recovery within 5 months and is still perfectly normal two years later...so that gives me hope.

I've read a lot of posts, and it appears that the progression is different in each person. In general, though, I've yet to find anyone speak of it moving that quickly throughout the entire body (two weeks) with bulbar and limb. Perhaps I'm wrong?

For now, I'm just trying to take it one day at a time. I think (hope) that I am slowly improving, as I can tell a big difference from where I was even just a month ago. Although the weakness was in all limbs, in the beginning my right leg in particular bothered me and felt at times so odd (tingling and like it was going to give out); yet, it now is very strong again, and I can walk and even run perfectly well. I've also had the feeling of stiffness, joint and muscle aches/pains, etc. Most of that has completely subsided.

My post is getting very long, but in closing...if you gave me a list of ALS and MS symptoms...I could probably check several off of each list. What my doctors have reminded me, though, and I think is very important for all of us to remember, is that the onset and progression is just as important as the actual list of symptoms. They are looking at my onset (immediately following virus) and progression (systemic within two weeks) as reasons why this points away from a neuro disease and towards a post-viral syndrome. Again, I HOPE with all my heart that they are right....who knows at this point. I just hope this helps with some of your anxiety. Please feel free to ask any questions. If needed, I can point you in the direction of a very good Post Viral Syndrome forum.
 
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