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POST VIRAL; ALS; MS;GBS?
Please someone help me.
I am a 33 y/o male with no significant medical history other than mild hypertension that is very well controlled. About three weeks ago, out of the blue, I noticed that I started slurring my speech from time to time. I am an ER RN so I mentioned it to the doc that I was working with and we did a CT on my head/brain. It was negative for a bleed or anything like that. The next day I called my used to be internist (no longer due to a change of insurance) and told him my symptoms over the phone. He suggested an MRI so I went and had a MRI/MRA of the brain. Also normal. Over the next couple of days I noticed pretty profound bilateral leg and arm weakness with like vibrating sensations going through my legs and at times difficulty concentrating or connecting the right thoughts with the right words. In looking back, i have to ask myself if this was due to anxiety or something else really going on although i do not think it was anxiety. After a couple of days my strength in my legs got better and but my speech did not improve and in a couple of more days the weakness returned. I saw a neurologist about one week into the symptoms because of being worried about als (my grandmothers sister had it late in life). The neuro said he did not think it was als because i didnt present that way. He also didnt think it was ms because the mri was negative. He was most interested that I had tested flu A positive about 4 weeks before and was told that it was probably swine flu as he was thinking that this is all post viral. That night, i got home and started to have fasiculations, twitching muscles, the same continued vibrations in my thighs with bilat leg and arm weakness. The neuro did some bloodwork (CBC, Sed rate, vit b 12, etc) all normal. EEG=normal. As time passed i started feeling strange twitches in my face, like fasiculations. One week after i saw the neuro i had an EMG done by another neuro in the same group. She did nerve conduction and EMG, made me do some squats and jump on one leg. She tested my left leg, left arm and under my left chin. Said everything was normal and that I did not have to worry about als. Since then I noticed that i have a hypoglossal nerve paralysis to the right side although my tongue remains strong (its only paralized if i attempt to "stick my tongue out at someone and vibrate it" and its only on the right front side i think). Went back to neuro and saw the neuro nurse practitioner who also said Im putting your hypoglossal nerve as intact because you can move your tongue. its only slightly impaired. For all i now this paralysis could have been there all along but i didnt notice it till i tried to stick my tongue out at a coworker. They all keep telling me its post viral but new symptoms seem to keep popping up. Now, three weeks out ive noticed that i want to push my tongue against my teeth sometimes...not always( and this was worse earlier in the week than now) and it seems like im trying to drool and that at times i have more saliva production. also, it seems that at times it seems like i want to drop what ever is in my hand...esp on the left. my bilat leg weakness and arm weakness seems to have improved alot but the last two days does seem to be trying to come back (although i have been making myself run around 1 mile the last couple of days.) My symptoms to seem to be worse at times than others but are always there. esp. the hypoglossal nerve (it might stay consistent) but the slurred speech is not always and sometimes much worse than others. my peers and friends say they cant even tell that my speech is slurred but i can cause i feel it not working right. so the big question is....what IS this? Can post viral really do all of these things...i would chill out and believe that but subtle new symptoms keep coming up. i am so scared that i have bulbar onset als. please help me with your advice anyone.
I am a 33 y/o male with no significant medical history other than mild hypertension that is very well controlled. About three weeks ago, out of the blue, I noticed that I started slurring my speech from time to time. I am an ER RN so I mentioned it to the doc that I was working with and we did a CT on my head/brain. It was negative for a bleed or anything like that. The next day I called my used to be internist (no longer due to a change of insurance) and told him my symptoms over the phone. He suggested an MRI so I went and had a MRI/MRA of the brain. Also normal. Over the next couple of days I noticed pretty profound bilateral leg and arm weakness with like vibrating sensations going through my legs and at times difficulty concentrating or connecting the right thoughts with the right words. In looking back, i have to ask myself if this was due to anxiety or something else really going on although i do not think it was anxiety. After a couple of days my strength in my legs got better and but my speech did not improve and in a couple of more days the weakness returned. I saw a neurologist about one week into the symptoms because of being worried about als (my grandmothers sister had it late in life). The neuro said he did not think it was als because i didnt present that way. He also didnt think it was ms because the mri was negative. He was most interested that I had tested flu A positive about 4 weeks before and was told that it was probably swine flu as he was thinking that this is all post viral. That night, i got home and started to have fasiculations, twitching muscles, the same continued vibrations in my thighs with bilat leg and arm weakness. The neuro did some bloodwork (CBC, Sed rate, vit b 12, etc) all normal. EEG=normal. As time passed i started feeling strange twitches in my face, like fasiculations. One week after i saw the neuro i had an EMG done by another neuro in the same group. She did nerve conduction and EMG, made me do some squats and jump on one leg. She tested my left leg, left arm and under my left chin. Said everything was normal and that I did not have to worry about als. Since then I noticed that i have a hypoglossal nerve paralysis to the right side although my tongue remains strong (its only paralized if i attempt to "stick my tongue out at someone and vibrate it" and its only on the right front side i think). Went back to neuro and saw the neuro nurse practitioner who also said Im putting your hypoglossal nerve as intact because you can move your tongue. its only slightly impaired. For all i now this paralysis could have been there all along but i didnt notice it till i tried to stick my tongue out at a coworker. They all keep telling me its post viral but new symptoms seem to keep popping up. Now, three weeks out ive noticed that i want to push my tongue against my teeth sometimes...not always( and this was worse earlier in the week than now) and it seems like im trying to drool and that at times i have more saliva production. also, it seems that at times it seems like i want to drop what ever is in my hand...esp on the left. my bilat leg weakness and arm weakness seems to have improved alot but the last two days does seem to be trying to come back (although i have been making myself run around 1 mile the last couple of days.) My symptoms to seem to be worse at times than others but are always there. esp. the hypoglossal nerve (it might stay consistent) but the slurred speech is not always and sometimes much worse than others. my peers and friends say they cant even tell that my speech is slurred but i can cause i feel it not working right. so the big question is....what IS this? Can post viral really do all of these things...i would chill out and believe that but subtle new symptoms keep coming up. i am so scared that i have bulbar onset als. please help me with your advice anyone.
Hello Doctors Looking for help!
33 yr old Job Military .I have a bulge below my navel after intense abdominal exercise for 3 yrs now. ( seems to be getting bigger)
2. I am not sure if there is a relationship but over the last months I keep finding it difficult to breath and it burns my nostrils sometimes when I breath .
3. I start getting hoarse very regular and sometimes to the point I cannot talk.
4. I am also starting to develop a porch under my chin all of a sudden as well.I have flem in my throat and it feels like I want to vomit . I think the porch in my belly maybe a hernia could that be contributing to the hoarseness and lost of voice and difficulty breathing.
Please help!!!!
33 yr old Job Military .I have a bulge below my navel after intense abdominal exercise for 3 yrs now. ( seems to be getting bigger)
2. I am not sure if there is a relationship but over the last months I keep finding it difficult to breath and it burns my nostrils sometimes when I breath .
3. I start getting hoarse very regular and sometimes to the point I cannot talk.
4. I am also starting to develop a porch under my chin all of a sudden as well.I have flem in my throat and it feels like I want to vomit . I think the porch in my belly maybe a hernia could that be contributing to the hoarseness and lost of voice and difficulty breathing.
Please help!!!!
In my case( on the contengency that it is only TM) I had my hopefully one and only real attack back in 1/09. I still have some risidules from it. It can take up to 2 yrs to recover.It's broken up like this.1/3 makes almost 100% recovery,1/3 makes a partial recovery and the remaining 1/3 doesnt recover at all. I have accepted what my new normal is.
I really dont know why doctors want to blame everything on stress/anxiety.
In the beginning of all this I was told I was anorexic and suffering from anxiety and panic attacks. But here I am less that a year later with 15 brain lesions and facing possible MS.
My advice is to believe in yourself and your symptoms.
I really dont know why doctors want to blame everything on stress/anxiety.
In the beginning of all this I was told I was anorexic and suffering from anxiety and panic attacks. But here I am less that a year later with 15 brain lesions and facing possible MS.
My advice is to believe in yourself and your symptoms.
Boy does this ever sound like what I have, I had a terrible virus a year ago, inflammed throat, terrible sinus. A month or so it the leg tingling and foot numbness started, My ears started ringing right away. About 5 months later the sinus went away but I feel so weak some days, awesome others, aching and all my limbs are affected. Glad to hear that ALS will not affect all your limbs but I know that when this goes on for so long ones mind goes to all those bad disseases. I am started on Clelexa thinking maybe the stress I have been under the last year and a half is causing this but I wonder if this post viral thing ever goes away?? If not my life is going to certainly be challenging. The virus' out that we truly scary.
well guys. i saw the new neurologist today. she said my neuro exam was perfectly normal clinically and that she too suspects post viral illness and that it will just take time to recover. she is going to test me for myasthenia gravis just to make sure but says that she doubts thats the problem. and concerned cass, she also mentioned what you doc did and said that als would NOT present with this all over the place sort of symptoms and so suddenly. just wanted to give an update. off to dinner now :)
I too experience fatigue and flu-like symptoms. My symptoms sort of flare and remit.Some days I feel like I am 100 yrs old every bone ,joint and muscle hurts. But unfortunatly alot of the Fibro/CFS symptoms mimic TM and MS. My neuro said that I was way beyond the criteria for Fibro/CFS.That led me to the TM dx. I have had EVP's and they were normal.I have not had EMG done.
ConcernedCass,
Yes you could have TM and have a normal MRI.It also depends how soon your mri was done after symptom onset.
I had partial or incomplete TM.I never had paralysis.
My neuro believes my damage was in my cervical spine but by the time I got a cervical mri(almost 2 after symptom onset) it was too late to tell.With TM you do not have symtoms above the the level of spinal cord damage.I
You can have normal mri's in the beginning and still have MS.It can take time for lesions to show up.
TM can be primary or a symptom of somthing else like MS,Lupus,Diabetes,Thyroid disease and a ton of other autoimmune diseases.
It does not hurt to see a Rheumatologists to help rule out other possible autoimmune nasties......
ConcernedCass,
Yes you could have TM and have a normal MRI.It also depends how soon your mri was done after symptom onset.
I had partial or incomplete TM.I never had paralysis.
My neuro believes my damage was in my cervical spine but by the time I got a cervical mri(almost 2 after symptom onset) it was too late to tell.With TM you do not have symtoms above the the level of spinal cord damage.I
You can have normal mri's in the beginning and still have MS.It can take time for lesions to show up.
TM can be primary or a symptom of somthing else like MS,Lupus,Diabetes,Thyroid disease and a ton of other autoimmune diseases.
It does not hurt to see a Rheumatologists to help rule out other possible autoimmune nasties......
I KNOW WHAT YOU ARE GOING THROUGH...I've been experiencing the same internal turmoil for the past 5-6 weeks!!!! Who know's what this will end up being, for either of us, but right now I'm sticking with what ALL of my docs have told me and that is post-viral syndrome. Oh ya, they said that they've exhausted the neuro route and actually want me looking at seeing an Infectious Disease Specialist, just in case this is not post-viral. Anyhow, I do not have the extent of the Bulbar involvement that you described in your post. I've just had what feels like my throat is closing in, kindof hoarse voice, etc....but my doc diagnosed me with a bad allergy related sinus infection and swollen tonsils last week. Allergies are HORRIBLE right now where I am located...everyone is having problems, hoarse voice, etc. Anyhow, everything I've read on CFS/ME shows that it can definitely impact your pharynx and other areas in your mouth. I guess if it is making your limbs fatigued/weak, it is making other body parts weak also. In addition, I spoke with my doc again today and specifically mentioned your case, he said AGAIN that ALS does not present that way....acutely following a virus with both Bulbar and multi-limb involvement. He keeps reassuring me of the same thing. In addition, the cognitive involvement (memory, trouble find words, concentration, brain fog), vision issues, dizziness, fatigue, tingling/numbness/burning feet, and several other issues that acutely onset with the weakness are definitely consistent with post-viral not ALS. It sounds like you may have had or are having some of the same. My only residual symptoms are the tremors (which I only feel at night and are NOT showing up on EMG), bilateral limb weakness, and sinus/allergy issues impacting my nasal and throast areas. Oh ya, I feel very "flu-like" now....my ankles, wrists, elbows, and body in general (migrating pain) aches. I heard that this is very common, also, with CFS/ME...always feeling like the flu is setting in.
I wanted to note...post-exertional fatigue/weakness is common with CFS/ME...so be careful. I don't know if you've noticed, but your good days followed by a couple of bad days could actually be due to the fact that on your "good" days you are over exerting yourself and you end up paying for it the next 24-48 hours. I've seen a direct relationship to that for me. I use to run about 6 miles daily prior to this. Now, I try to work-out maybe 20 minutes a couple times a week...but during this time when our immune systems are weak and our bodies are under attack, even that could cause severe weakness/fatigue following. You need to build up very slowly. In fact, I've done a lot of research on those that have successfully recovered in a timely manner from CFS/ME and sleep is key (at least 8 hours), diet, vitamins, and caution to not over exert. My doc even said that just doing 10 minutes of LIGHT cardio (eliptical NOT RUNNING) a couple times a week would be better. I KNOW how you are feeling...it's just a weird feeling to have these "weak/fatigued" limbs and bad grip...for example, I can't always grip my mouse very well while on the computer or my fork while eating. BUT that comes and goes. I am STRONG enough to do everything, but it's as though my body is saying don't do it, your muscles are tired! I can actually exert the force, but feel like I "pay for it" afterwards. Have you noticed any other changes? I feel like this is impacting my endocrine, circulatory, and other systems. I can't handle any type of stress anymore...it's like my body becomes weak immediately. I also initially had a lot of sensitivity to lights, sounds, and smells.
Anyhow, I'm sharing with you b/c I know it helps to know you are not the only one going through this. The term CFS is misleading b/c it makes you think that you have to be "very tired" to fit within the dx or that is the primary issue. I'm praying for you. You are going to get through this; it just takes time. Let me know if you want the list of vitamins for the mitochondria modulation therapy. That might help!
I wanted to note...post-exertional fatigue/weakness is common with CFS/ME...so be careful. I don't know if you've noticed, but your good days followed by a couple of bad days could actually be due to the fact that on your "good" days you are over exerting yourself and you end up paying for it the next 24-48 hours. I've seen a direct relationship to that for me. I use to run about 6 miles daily prior to this. Now, I try to work-out maybe 20 minutes a couple times a week...but during this time when our immune systems are weak and our bodies are under attack, even that could cause severe weakness/fatigue following. You need to build up very slowly. In fact, I've done a lot of research on those that have successfully recovered in a timely manner from CFS/ME and sleep is key (at least 8 hours), diet, vitamins, and caution to not over exert. My doc even said that just doing 10 minutes of LIGHT cardio (eliptical NOT RUNNING) a couple times a week would be better. I KNOW how you are feeling...it's just a weird feeling to have these "weak/fatigued" limbs and bad grip...for example, I can't always grip my mouse very well while on the computer or my fork while eating. BUT that comes and goes. I am STRONG enough to do everything, but it's as though my body is saying don't do it, your muscles are tired! I can actually exert the force, but feel like I "pay for it" afterwards. Have you noticed any other changes? I feel like this is impacting my endocrine, circulatory, and other systems. I can't handle any type of stress anymore...it's like my body becomes weak immediately. I also initially had a lot of sensitivity to lights, sounds, and smells.
Anyhow, I'm sharing with you b/c I know it helps to know you are not the only one going through this. The term CFS is misleading b/c it makes you think that you have to be "very tired" to fit within the dx or that is the primary issue. I'm praying for you. You are going to get through this; it just takes time. Let me know if you want the list of vitamins for the mitochondria modulation therapy. That might help!
Well guys. Thanks for your posts. I keep telling myself this MUST be post viral because of the sudden onset and like you said cass, both bulbar and extremity problems at the same time and so abruptly. also, my symptoms seem worse some days and better others. It kinda freaks me out because i did have a hoarse voice the first few weeks but that seems to be getting better, or maybe im just used to it now. but obviously whatever this is has affected my cranial nerves which is what causes the bulbar like symptoms (i think). I obviously have had a hypoglossal nerve injury because the right front portion of my tongue is paralyzed which is what has been causing me to slur i think. there are times that it is mildly difficult to swallow as well, but again comes and goes. my tongue, im thinking, has actually improved as has my slurred speech. im not back to normal but when i assess the movement it seems like it works much more on the right side now and my speech has cleared up alot. im not holding my breath though because these things have come and gone through the weeks. well...maybe not come and gone, but for sure have waxed and waned (better at times, worse at times). the other day when i was trying to dry my hair i could harldy hold up the hair dryer and now still mildy weak but not nearly as much. for a few days off and on i felt like i just wanted to drop things right out of my hands or that i couldnt hold on to my dogs leash tight enough. that too has not been there for a few days. what drives me crazy and really scares me though is the fasiculations! they are a sign of als and that scares me so much! i have had an EMG done since the onset of fasiculations which was normal (thank God!). Although I didnt have any fasics during the exam I was talking to the EMG doc (who is extremely qualified. i am in the medical field and every MD i mention her to says she is very very good, that she catches cases that others dont) about them and she said that muscles just twitch sometimes and there are alot of unknown reasons but if ALS were causing the fasiculations that the EMG would not be normal because fasics are a symptom and that essentially the physiology of the body would have already changed and be detectable on EMG. she did a few other things like making me jump up and down and do some squats and said "you are very normal...you do NOT have ALS". this made me feel better for a few days and the fasics actually diminished greatly for a while but now they are back and i wonder if its because im so freaking stressed! its like when the docs tell me im ok i believe it for a few days and then back to the obsessing i go! also, my arm weakness and aching is worse in the morning when i wake up. as the day goes on, even about 10 min after getting up, i feel much better. have you guys experienced anything like that? there are a couple of other things that make me think it must be post viral (or that i try and keep convincing myself that it is). first, i have these wide spread symptoms with spinal cord pain. sometimes the pain is lower sometimes cervical area and sometimes in the middle. also, on the days when i feel strong enough to run there have been a couple of times that when i get back home from running and get still, i notice this very odd headache. its not like a deep internal normal throbbing headache. it seems superficial and the pain is sharp, goes from the back of my head to the front and my facial nerves under my chin feel inflammed and burning like. also, things seem kinda foggy. this feeling last for just 15 min or so and then resolves. i dont know anymore! this is all very bizarre. but i wish i knew what i was. i am so afraid for my family that they are going to lose me :-(. its torture everyday to think about. i just keep praying and thank God that my faith has increased over the past couple of years cause thats alot of what im holding on to right now. hearing stories from people like you guys help so much. it seems like the docs are very dismissive. they are like...well...this is normal and that is normal so its post viral..bye! and im like...but im not FEELING normal! help me. educate me so that i can be at peace! ya know!
Thanks for your insight. Per your suggestion, I just read on Transverse Myelitis. I think it is a possibility, particular b/c I have had bladder and bowl disturbances and muscle weakness. My weakness is in all limbs, but most noticeable and bothersome in my arms and hands. I did have three MRI's, one of the Spinal Chord. I know they were looking for MS lesions in the MRI's; would the inflammation not be detected? Could I have clean MRI's and actually have Transverse Myelitis. I actually talked with some colleagues who are OT's/PT"s in the area that had worked with TM patients in the past and they spoke of the patients being almost paralyzed. I guess it can manifest in varying degrees???? I can still pick things up...but just notice that I am generally weaker in my limbs (pretty constant but worse when I don't get adequate sleep or when I exert myself too much the day before). Also, I really don't have any radiating pain (across from maybe one or two incidences during the past six weeks); at this point, my pain is more arthritic-like or flu-like aches, particularly in my legs and hands. Oddly enough, I had my first B12 injection last night. I did not really experience any "energy boost" but noticed that my weakness definitely improved AND my vision improved IMMEDIATELY. It's crazy b/c I didn't think I was really having vision disturbances (apart from reaction to light the first couple of weeks and things appearing a bit blurrier than usual). About an hour after the shot, I noticed that everything seemed clearer...as though I had been living in a "fog" the past six weeks.
Hi I think I can help ..
I had a cold back in 1/09.About 2 weels afterwards I started to have severe neurological issues. I also had what felt like stroke symptoms. Anyway to make this as short as possible....After going to numerous doctors and have tons of tests done I still knew nothing. After 6 months I finally found a great neurologist and he diagnosed me with Post Viral Transverse Myelitis and complcated migraines.It is basically when your immune symptom overeacts and attacks your spinal cord.It does not progress like MS does but it can leave you with alot of risidules.Unfortunatly I'm heading towards a MS diagnosis now due to brain lesions and other symptoms.....
Please go to the website,it should give you some clarity......
Take Care.......
http://www.myelitis.org/
I had a cold back in 1/09.About 2 weels afterwards I started to have severe neurological issues. I also had what felt like stroke symptoms. Anyway to make this as short as possible....After going to numerous doctors and have tons of tests done I still knew nothing. After 6 months I finally found a great neurologist and he diagnosed me with Post Viral Transverse Myelitis and complcated migraines.It is basically when your immune symptom overeacts and attacks your spinal cord.It does not progress like MS does but it can leave you with alot of risidules.Unfortunatly I'm heading towards a MS diagnosis now due to brain lesions and other symptoms.....
Please go to the website,it should give you some clarity......
Take Care.......
http://www.myelitis.org/
Hello,
It’s crazy to read your post, b/c I have been enduring the exact same thing since the beginning of October, so I guess 6 weeks now! I was and still am very concerned about ALS, b/c I seem to have ALL of the symptoms. Like yours, though, MOST of them came on suddenly six weeks ago following a very bad bout with gastroenteritis. A week following the virus, I first noticed hand weakness when working on my laptop, which within a day became general limb weakness (primarily in arms) and extreme fatigue. The next week I experienced the severity of my symptoms to include bilateral limb weakness in arms and legs (primarily noticeable in arms and hands, though, as that is what I used a lot for typing, holding newborn, etc), tingling in limbs when any pressure was applied, dizziness, brain fog, difficulty speaking, etc. I though Guillian Barre and went to ER. They did MRI of brain to check for MS….no lesions. Went to Neuro that week who did Nerve Conduction Study of all limbs, feet, and hands…normal. He did an EMG of my right leg….normal. He said it was post-viral syndrome and told me to take vitamins and get a juicer. I was relieved, but thought that was a bit odd…b/c I felt so horrible. My symptoms progressed, so I went to a PCP the next week and had a lot of blood tests ran…all normal, accept for low end of normal B12 (400’s…so not too low). My PCP panicked during the exam b/c my eyes were doing funky things and she ran out of the room and called an MS Neuro Specialist. I saw him that week and he told me he was pretty sure it was MS. During the next week he had me do several more MRI’s , evoked potentials, and many other MS tests. They all came back normal. When I asked about ruling out ALS, he said he couldn’t rule it out but it was highly unlikely b/c my “voice isn’t hoarse and I don’t twitch”. Well, that made me panic even more, b/c I do twitch occasionally and since this started, I’ve had the worst body tremors (particularly noticeable at night). In addition, I got diagnosed with a bad sinus infection the following week and prior to that I was having difficulty breathing (throat would close almost while I was speaking) and my voice started to get hoarse! I had my follow-up the next week with Neuro #1 (who first diagnosed me with post-viral). He repeated the NCS and EMG on my problem areas and said all was normal. He said that in his 50+ years of experience as a Neuro that this WAS NOT ALS b/c it did not present like ALS AT ALL. SURE….I had MANY of the symptoms, but they ALL suddenly appeared 1-2 weeks after a very bad viral infection. Furthermore, he said my symptoms extended far beyond ALS symptoms, to attacking multiple body symptoms. In addition, he said my “weakness” was actually muscle fatigue, not “objective muscle weakness” b/c I rate a 5+ on all of my strength tests with all limbs, hands and feet. At this point, many of my crazy neuro symptoms have subsided. What persists (and scares me) is my muscle weakness. I also feel like I have a weak tongue and throat…I guess the virus can attack all body parts and symptoms. I have frequent urination, diarrhea, cold hands, poor temperature regulation, inability to handle stress (problems with adrenal glands), sensitivity to light, smell, sounds, etc. I don’t get very dizzy anymore, burning feet and tingling have stopped, cognition is improving, crazy vision issues have improved, and I stopped feeling tired a few weeks ago (apart from muscle weakness). I have a hard time taking that this is truly Post-viral Fatigue Syndrome, b/c apart from the first week or so, I wasn’t really fatigued. The doctor says that it manifest differently in everyone, though, and my fatigue is muscle fatigue. Have you noticed any changes like post-exertion fatigue or more fatigue/weakness after not getting a good night’s rest? Prior to this (seven weeks ago) I was perfectly healthy and could’ve ran a marathon. Now, I try to work out a couple times a week (light activity on the elliptical) b/c my doc says it’s good for my circulation issues. I am seeing a chiro twice a week. I am also on LOTS of vitamins and started mitochondria modulation therapy last week (unique combo of vitamins). In addition, this afternoon I will be going in for my first B12 injection. I’d love to share more info with you, like the mitochondria modulation therapy, if you are interested. At this point, I’d like to say the following (that I’ve learned from my doc’s)….ALS does not present literally over night with bulbar and weakness in multiple limbs. I struggle each day to put ALS out of my mind…I trust my docs, neuros, and everyone else trying to find an answer. Etiology is just as KEY to diagnosis as the symptoms. Meaning, we may have all the ALS symptoms (both limb and bulbar) but we need to consider the onset (acute following virus). In addition, it sounds like your weakness may be subjective (like mine). ALS is true/objective muscle weakness. Oh ya, I’ve been feeling “flu-like” the past few weeks with achy joints (elbows, ankles, etc), migrating pain (not extreme), sometimes even cramping of different areas. Stop reading on ALS and start reading on ME/Post-viral…you will find that your symptoms align more closely with those. I’d love to speak more with you, as it sounds like we are going through the same thing at the same time.
It’s crazy to read your post, b/c I have been enduring the exact same thing since the beginning of October, so I guess 6 weeks now! I was and still am very concerned about ALS, b/c I seem to have ALL of the symptoms. Like yours, though, MOST of them came on suddenly six weeks ago following a very bad bout with gastroenteritis. A week following the virus, I first noticed hand weakness when working on my laptop, which within a day became general limb weakness (primarily in arms) and extreme fatigue. The next week I experienced the severity of my symptoms to include bilateral limb weakness in arms and legs (primarily noticeable in arms and hands, though, as that is what I used a lot for typing, holding newborn, etc), tingling in limbs when any pressure was applied, dizziness, brain fog, difficulty speaking, etc. I though Guillian Barre and went to ER. They did MRI of brain to check for MS….no lesions. Went to Neuro that week who did Nerve Conduction Study of all limbs, feet, and hands…normal. He did an EMG of my right leg….normal. He said it was post-viral syndrome and told me to take vitamins and get a juicer. I was relieved, but thought that was a bit odd…b/c I felt so horrible. My symptoms progressed, so I went to a PCP the next week and had a lot of blood tests ran…all normal, accept for low end of normal B12 (400’s…so not too low). My PCP panicked during the exam b/c my eyes were doing funky things and she ran out of the room and called an MS Neuro Specialist. I saw him that week and he told me he was pretty sure it was MS. During the next week he had me do several more MRI’s , evoked potentials, and many other MS tests. They all came back normal. When I asked about ruling out ALS, he said he couldn’t rule it out but it was highly unlikely b/c my “voice isn’t hoarse and I don’t twitch”. Well, that made me panic even more, b/c I do twitch occasionally and since this started, I’ve had the worst body tremors (particularly noticeable at night). In addition, I got diagnosed with a bad sinus infection the following week and prior to that I was having difficulty breathing (throat would close almost while I was speaking) and my voice started to get hoarse! I had my follow-up the next week with Neuro #1 (who first diagnosed me with post-viral). He repeated the NCS and EMG on my problem areas and said all was normal. He said that in his 50+ years of experience as a Neuro that this WAS NOT ALS b/c it did not present like ALS AT ALL. SURE….I had MANY of the symptoms, but they ALL suddenly appeared 1-2 weeks after a very bad viral infection. Furthermore, he said my symptoms extended far beyond ALS symptoms, to attacking multiple body symptoms. In addition, he said my “weakness” was actually muscle fatigue, not “objective muscle weakness” b/c I rate a 5+ on all of my strength tests with all limbs, hands and feet. At this point, many of my crazy neuro symptoms have subsided. What persists (and scares me) is my muscle weakness. I also feel like I have a weak tongue and throat…I guess the virus can attack all body parts and symptoms. I have frequent urination, diarrhea, cold hands, poor temperature regulation, inability to handle stress (problems with adrenal glands), sensitivity to light, smell, sounds, etc. I don’t get very dizzy anymore, burning feet and tingling have stopped, cognition is improving, crazy vision issues have improved, and I stopped feeling tired a few weeks ago (apart from muscle weakness). I have a hard time taking that this is truly Post-viral Fatigue Syndrome, b/c apart from the first week or so, I wasn’t really fatigued. The doctor says that it manifest differently in everyone, though, and my fatigue is muscle fatigue. Have you noticed any changes like post-exertion fatigue or more fatigue/weakness after not getting a good night’s rest? Prior to this (seven weeks ago) I was perfectly healthy and could’ve ran a marathon. Now, I try to work out a couple times a week (light activity on the elliptical) b/c my doc says it’s good for my circulation issues. I am seeing a chiro twice a week. I am also on LOTS of vitamins and started mitochondria modulation therapy last week (unique combo of vitamins). In addition, this afternoon I will be going in for my first B12 injection. I’d love to share more info with you, like the mitochondria modulation therapy, if you are interested. At this point, I’d like to say the following (that I’ve learned from my doc’s)….ALS does not present literally over night with bulbar and weakness in multiple limbs. I struggle each day to put ALS out of my mind…I trust my docs, neuros, and everyone else trying to find an answer. Etiology is just as KEY to diagnosis as the symptoms. Meaning, we may have all the ALS symptoms (both limb and bulbar) but we need to consider the onset (acute following virus). In addition, it sounds like your weakness may be subjective (like mine). ALS is true/objective muscle weakness. Oh ya, I’ve been feeling “flu-like” the past few weeks with achy joints (elbows, ankles, etc), migrating pain (not extreme), sometimes even cramping of different areas. Stop reading on ALS and start reading on ME/Post-viral…you will find that your symptoms align more closely with those. I’d love to speak more with you, as it sounds like we are going through the same thing at the same time.
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