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Could this be MG or MS?
Sorry for the length, especially since I'm sure people hate these kind of posts. I don't usually post on message boards (any type, I'm an introvert even on the web!), but I'm desperate at this point and don't know where to go next for help so I'm posting to a couple different sites. I am very worrried at how most of my symptoms have become dramatically worse over the past month. Do the symptoms sound like something such as Myasthenia Gravis or MS? I tried to list the symptoms in the order they started, more or less.
Sciatic Pain right leg - Started Feb '16, mostly less bothersome now. Sometimes I get a similar, but much lesser, pain in the left leg.
Calf Pain right leg - Started in August '16, once sciatic pain was starting to feel better. Intermittent. Feels like a cramp.
Nystagmus - Started in June '16, came on completely out of the blue with vertigo. Seen by my doctor at the time. Plainly evident to the eye by February 17, it was probably visible before that I just never checked it myself or had any other doctors look at it. Since it started I feel like my eyes jump around when I try to focus. It's purely horizontal from what I can tell. I've barely been able to read since it started.
Eye Strain Feeling - Comes and goes since June '16. Eyes just feel really tired and hard to keep open. No correlation with screen time that I can tell.
Vertigo & Dizziness - Started June & July '16. Followed by months of feeling slightly dizzy. Then starting around February it became a constant feeling like my head was bouncing back and forth, usually worsened after driving long distances or using the computer all day.
Nausea / Motion sickness while not moving - Off and on since June 2016 (likely related to nystagmus)
Facial spasms with eye and mouth on right side - Started very sporadically in November 2016, but has now become a daily occurence.
Shortness of Breath - Gradually worse since Summer 16, was very intermittent, now almost constant. I've had good pulse ox's, and I don't feel like it's the lungs itself. It feels more like I can't get the muscles to work right.
Throat tightness - Since Fall 16, somewhat relieved by Baclofen. Before I started the baclofen I was constantly clearing my throat because of the tightness/chocking sensation.
Tightness in Chest - Since summer 16, has slowly gotten worse. I can't laugh or talk loudly because of this.
Tightness in Nose - since summer 16 - constantly feels like i can't breathe through my nose
Difficulty swallowing - Since summer 16. Has mostly felt like very slow motility, where I have to try and force it down my throat slowly or swallow multiple times. Haven't really choked on anything. However, over the past month I've had a couple scary moments where I go to swallow and I can't get my tongue to work for a minute or two.
Exercise Intolerance - Fall 16. After exercise I would suddenly start feeling faint/lightheaded, short of breath, and my chest and shoulder blade would hurt. These symptoms last for days after exercise. Originally happened only after long exercise periods, but has gradually happened with less and less activity. Now I can't even mow half of my yard without feeling miserable afterwards. (I previously had been running 30+ miles a week prior to this symptom, so I'm not out of shape, or at least wasnt when this started)
Weakness in triceps & shoulders - Feb 17, confirmed by neurologist. Fairly minor and was somewhat better a few months later at follow up. However, I have a lot of problems doing things which involve lifing my arms like combing my daughter's hair or trimming bushes around my house.
Worsened Posture - Have had bad posture for a while, but it's gotten considerably worse over last 3+ months. Feels like it's because my neck is weak and has a hard time holding my head up. Neuro gave me trigger point injections in May because she thought tightness was causing the problem, but they provided zero relief.
Twitches/Cramps - All over, started Fall 17, has gotten more often in past couple months. Seem to mostly be on right side. Not bothersome, just figured I'd mention it.
Suddness Faintness feeling - Just this past month, is occuring if I take a deep breath, talk a lot, or sometimes while just standing
Difficulty forming words - Summer 17 - Very slight, but feels my like my mouth is tight and has trouble moving
Abnormal tests; d-dimer, hoffman's sign left hand, romberg's (I sway, not fall), and VNG indicated central
Normal tests/vitals: Head MRI, Chest MRI/CT (done because of d-dimer being high in summer 16), Head and Neck MRA, Stress Test, Echo, ECG
Normal bloodwork: Blood count, electrolytes, liver/kidney, Thyroid, B12, ANA, ESR, CRP
Medicines tried; Lorazepam, valium, xanax, lyrica, cymbalta, flexeril, baclofen.
Baclofen is the only thing that's helped at all. I just recently read this is a key medicine for nystagmus, which might be why it helps a little. It also makes my tight throat feel a little better. None of the anti axiety drugs had any effects on my symptoms.
I also tried vestibular therapy for over 3 months. The doctor and therapists there saw my nystagmus and my issue with saccades and tracking. Unfortunately the therapy didn't help much.
Thank you to anybody who bothers to take the time to read this and offer any thoughts.
Sciatic Pain right leg - Started Feb '16, mostly less bothersome now. Sometimes I get a similar, but much lesser, pain in the left leg.
Calf Pain right leg - Started in August '16, once sciatic pain was starting to feel better. Intermittent. Feels like a cramp.
Nystagmus - Started in June '16, came on completely out of the blue with vertigo. Seen by my doctor at the time. Plainly evident to the eye by February 17, it was probably visible before that I just never checked it myself or had any other doctors look at it. Since it started I feel like my eyes jump around when I try to focus. It's purely horizontal from what I can tell. I've barely been able to read since it started.
Eye Strain Feeling - Comes and goes since June '16. Eyes just feel really tired and hard to keep open. No correlation with screen time that I can tell.
Vertigo & Dizziness - Started June & July '16. Followed by months of feeling slightly dizzy. Then starting around February it became a constant feeling like my head was bouncing back and forth, usually worsened after driving long distances or using the computer all day.
Nausea / Motion sickness while not moving - Off and on since June 2016 (likely related to nystagmus)
Facial spasms with eye and mouth on right side - Started very sporadically in November 2016, but has now become a daily occurence.
Shortness of Breath - Gradually worse since Summer 16, was very intermittent, now almost constant. I've had good pulse ox's, and I don't feel like it's the lungs itself. It feels more like I can't get the muscles to work right.
Throat tightness - Since Fall 16, somewhat relieved by Baclofen. Before I started the baclofen I was constantly clearing my throat because of the tightness/chocking sensation.
Tightness in Chest - Since summer 16, has slowly gotten worse. I can't laugh or talk loudly because of this.
Tightness in Nose - since summer 16 - constantly feels like i can't breathe through my nose
Difficulty swallowing - Since summer 16. Has mostly felt like very slow motility, where I have to try and force it down my throat slowly or swallow multiple times. Haven't really choked on anything. However, over the past month I've had a couple scary moments where I go to swallow and I can't get my tongue to work for a minute or two.
Exercise Intolerance - Fall 16. After exercise I would suddenly start feeling faint/lightheaded, short of breath, and my chest and shoulder blade would hurt. These symptoms last for days after exercise. Originally happened only after long exercise periods, but has gradually happened with less and less activity. Now I can't even mow half of my yard without feeling miserable afterwards. (I previously had been running 30+ miles a week prior to this symptom, so I'm not out of shape, or at least wasnt when this started)
Weakness in triceps & shoulders - Feb 17, confirmed by neurologist. Fairly minor and was somewhat better a few months later at follow up. However, I have a lot of problems doing things which involve lifing my arms like combing my daughter's hair or trimming bushes around my house.
Worsened Posture - Have had bad posture for a while, but it's gotten considerably worse over last 3+ months. Feels like it's because my neck is weak and has a hard time holding my head up. Neuro gave me trigger point injections in May because she thought tightness was causing the problem, but they provided zero relief.
Twitches/Cramps - All over, started Fall 17, has gotten more often in past couple months. Seem to mostly be on right side. Not bothersome, just figured I'd mention it.
Suddness Faintness feeling - Just this past month, is occuring if I take a deep breath, talk a lot, or sometimes while just standing
Difficulty forming words - Summer 17 - Very slight, but feels my like my mouth is tight and has trouble moving
Abnormal tests; d-dimer, hoffman's sign left hand, romberg's (I sway, not fall), and VNG indicated central
Normal tests/vitals: Head MRI, Chest MRI/CT (done because of d-dimer being high in summer 16), Head and Neck MRA, Stress Test, Echo, ECG
Normal bloodwork: Blood count, electrolytes, liver/kidney, Thyroid, B12, ANA, ESR, CRP
Medicines tried; Lorazepam, valium, xanax, lyrica, cymbalta, flexeril, baclofen.
Baclofen is the only thing that's helped at all. I just recently read this is a key medicine for nystagmus, which might be why it helps a little. It also makes my tight throat feel a little better. None of the anti axiety drugs had any effects on my symptoms.
I also tried vestibular therapy for over 3 months. The doctor and therapists there saw my nystagmus and my issue with saccades and tracking. Unfortunately the therapy didn't help much.
Thank you to anybody who bothers to take the time to read this and offer any thoughts.
COMMUNITY LEADER
Hi and welcome,
I have a question ping ponging around my noodle brain, what on earth is your neurologist saying is causing these symptoms?
The test result that would be expected to be abnormal, to be suggestive or consistent with MS, your saying have come up normal which would typically put MS low on the list compared to other potential explanations...
If you've gone through vestibule testing and tried the recommended vestibular therapy for 3 months, it would of made more sense to me that the testing would of been indicating benign paroxysmal positional vertigo (BPPV) the more common peripheral vestibular disorder to account for the nystagmus, lightheaded-dizziness-vertigo, motion sickness-nausea and any of the other associated vestibular symptoms, than central vestibular pathways in the brain, although that might explain why the therapy didn't do diddly..
Central nervous system causes of vertigo (central vestibular disorders) are things like brain stem vascular disease, arteriovenous malformations, acoustic neuromas and tumors of the brain stem and cerebellum, multiple sclerosis, and vertebrobasilar migraine....with your brain MRI's being normal though the only condition i can think of would be migraine related conditions.
The positive Hoffmans is more specific to location ie lesion or damage above the C5 or C6 level of the cervical spine but whilst it's associated with MS, its also associated with ALS, spinal cord compression, cervical spondylitis, tumors, or degenerative arthritis, anxiety and hyperthyroid to name a few.
The Romberg Test is a non-specific test of neurological or inner ear dysfunction and doesn't indicate any specific condition but it can help to point towards the more likely issue. Basically balance comes from the combination of 3 key nervous system functions, proprioception, vestibular, and vision but you need two to maintain normal balance. Removing your vision it leaves only two proprioception and vestibular and if all your neuro testing was normal that imho more likely indicating the imbalance is vestibular disorder (labyrinthine) related.
Heads up regarding balcofen, whilst it can be great in relaxing and improving problematic muscle(s) issues, it will also relax all the non problematic muscles and can cause additional side effects too...common balcofen side effects; lower blood pressure, dizziness or lightheadedness, drowsiness or fatigue, nausea, tight chest or mild breathing issues, speech issues, muscle weakness, cause or exacerbate Nystagmus, blurred, diplopia and other visual impairments etc etc Side effects might be worth considering and discussing with your prescribing neuro.
Hmmmm after all that i'm honestly at a loss to come up with anything specif, if anything i think it's unlikely a neurological condition like MS, i don't know enough about MG to say anything sorry!
Hope that helps a little though......JJ
I have a question ping ponging around my noodle brain, what on earth is your neurologist saying is causing these symptoms?
The test result that would be expected to be abnormal, to be suggestive or consistent with MS, your saying have come up normal which would typically put MS low on the list compared to other potential explanations...
If you've gone through vestibule testing and tried the recommended vestibular therapy for 3 months, it would of made more sense to me that the testing would of been indicating benign paroxysmal positional vertigo (BPPV) the more common peripheral vestibular disorder to account for the nystagmus, lightheaded-dizziness-vertigo, motion sickness-nausea and any of the other associated vestibular symptoms, than central vestibular pathways in the brain, although that might explain why the therapy didn't do diddly..
Central nervous system causes of vertigo (central vestibular disorders) are things like brain stem vascular disease, arteriovenous malformations, acoustic neuromas and tumors of the brain stem and cerebellum, multiple sclerosis, and vertebrobasilar migraine....with your brain MRI's being normal though the only condition i can think of would be migraine related conditions.
The positive Hoffmans is more specific to location ie lesion or damage above the C5 or C6 level of the cervical spine but whilst it's associated with MS, its also associated with ALS, spinal cord compression, cervical spondylitis, tumors, or degenerative arthritis, anxiety and hyperthyroid to name a few.
The Romberg Test is a non-specific test of neurological or inner ear dysfunction and doesn't indicate any specific condition but it can help to point towards the more likely issue. Basically balance comes from the combination of 3 key nervous system functions, proprioception, vestibular, and vision but you need two to maintain normal balance. Removing your vision it leaves only two proprioception and vestibular and if all your neuro testing was normal that imho more likely indicating the imbalance is vestibular disorder (labyrinthine) related.
Heads up regarding balcofen, whilst it can be great in relaxing and improving problematic muscle(s) issues, it will also relax all the non problematic muscles and can cause additional side effects too...common balcofen side effects; lower blood pressure, dizziness or lightheadedness, drowsiness or fatigue, nausea, tight chest or mild breathing issues, speech issues, muscle weakness, cause or exacerbate Nystagmus, blurred, diplopia and other visual impairments etc etc Side effects might be worth considering and discussing with your prescribing neuro.
Hmmmm after all that i'm honestly at a loss to come up with anything specif, if anything i think it's unlikely a neurological condition like MS, i don't know enough about MG to say anything sorry!
Hope that helps a little though......JJ
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