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MS and Myasthenia Gravis
I have had negative antibody testing for Myasthenis gravis but has textbook symptoms that my neurologist is starting me on Mestinon after Optos arteriogram of the eyes to rule out Von hipple Lindau due to right sided weakness from face to feet which has impaired my gait. Also with history of proximal Myopathy with cause unknown with extensive lab test but abnormal EMG and physical exam.The gait is worsen more with exertion and fatigue. I have balance issues and use a cane. I have history of enlarged optic disc. I've also been diagnosed with small fiber neuropathy due to abnormal QSART. Can one have both MG and MS and is the right sided weakness more likely with MS or MG. MRI without contrast ( allergic to contrast) reveal
" Multiple scattered foci T2 hyperintensity: Mild burden of nonspecific supratentorial white matter changes and more extensive network of prominent perivascular space particularly near the vertex involving frontal and parietal lobes. Thahks for your guidance and feedback
" Multiple scattered foci T2 hyperintensity: Mild burden of nonspecific supratentorial white matter changes and more extensive network of prominent perivascular space particularly near the vertex involving frontal and parietal lobes. Thahks for your guidance and feedback
CSF negative/normal. I guess I don' t have MS at this point and my doc will be doing genetic testing next for the ataxia. You have been great and I appreciate your support and feedback. I truly hope your eyes get better. Thanks again
I was so glad when my LP was over too, I hope the results come back soon!
Like you, I had tried allergy meds and eye drops but I wonder if I should have used them sooner for them to be effective? I'll find out soon. I showed a friend what my worst day was from a pic I took last year and she said her allergies caused the same "look". Like me no sinus issues or itching so my fingers are crossed that is all it is.
Corrie
Like you, I had tried allergy meds and eye drops but I wonder if I should have used them sooner for them to be effective? I'll find out soon. I showed a friend what my worst day was from a pic I took last year and she said her allergies caused the same "look". Like me no sinus issues or itching so my fingers are crossed that is all it is.
Corrie
Corrie,
Thanks for the update.I hope your eyes are due to allergies. As for my condition allergy medicine has not made any difference(I get allergy shots and take allergy meds). My eyes steams from fatigue. It droops more when I'm fatigue. If yours doesn't do that, than its most likely allergy. Let me know how it responds to the medicnce
I had the LP and waiting for results. I hope to never have one again..not pleasant along with the headaches. Saw Neuro few days ago. He's not yet convinced that its MS although I have MS symptoms and my neuro exam is abnormal. He think it maybe be due to a condition called "Stiff Person Syndrome" due to the spastic way that I walk, if the LP comes back negative. He did blood work for that. I'm frustrated and continue to get worst. I'll keep you posted of the results
Thanks for the update.I hope your eyes are due to allergies. As for my condition allergy medicine has not made any difference(I get allergy shots and take allergy meds). My eyes steams from fatigue. It droops more when I'm fatigue. If yours doesn't do that, than its most likely allergy. Let me know how it responds to the medicnce
I had the LP and waiting for results. I hope to never have one again..not pleasant along with the headaches. Saw Neuro few days ago. He's not yet convinced that its MS although I have MS symptoms and my neuro exam is abnormal. He think it maybe be due to a condition called "Stiff Person Syndrome" due to the spastic way that I walk, if the LP comes back negative. He did blood work for that. I'm frustrated and continue to get worst. I'll keep you posted of the results
Hi there! I hope all went well with the LP. :-)
Had my neuro appt today and showed him a pic I had taken last summer when my eye swelling was really bad.
Interestingly he thinks it is allergy-related. Who knew? No congestion, no itching, watering or allergy black eye look.
I am going to see if my optometrist can recommend drops. I tried OTC ones but di not notice a differenc.
Corrie
Had my neuro appt today and showed him a pic I had taken last summer when my eye swelling was really bad.
Interestingly he thinks it is allergy-related. Who knew? No congestion, no itching, watering or allergy black eye look.
I am going to see if my optometrist can recommend drops. I tried OTC ones but di not notice a differenc.
Corrie
Good luck with your LP. I hope you find answers if not in the LP but somewhere.
Have your had a c spine MRI? I do not have any lesions on or around optic nerves on MRI (my brain is cluttered with them but not around optics) ... I do however have lesions on my c spine.
Has any doctors mentioned steroids as an option for treatment? Perhaps it is premature but it is a MS treatment that can help treat a flare.
It seems like you have some medical professionals who care on your side.
I wish you well and will follow to see how you make out.
Cheers!
Cann
Have your had a c spine MRI? I do not have any lesions on or around optic nerves on MRI (my brain is cluttered with them but not around optics) ... I do however have lesions on my c spine.
Has any doctors mentioned steroids as an option for treatment? Perhaps it is premature but it is a MS treatment that can help treat a flare.
It seems like you have some medical professionals who care on your side.
I wish you well and will follow to see how you make out.
Cheers!
Cann
Thank you Corrie. Let me know what your Neuro thinks during your next eval. I was asked the same question and thought I had to have the lid completely closed to be a true ptosis but not so. I initially thought it was allergies until I noticed that it gets worst when I get tired or after a warm bath or shower. I promise to keep you posted after LP results (schedule LP 5/2)
Hi there and welcome!
I get occasional ptosis but never found it to be related to MS so I hope my neuro can shed some light when I see him in a couple of weeks.
Like Cann, I wonder if brain lesions could be the cause. My neuro asked me last year if I thought one of my eyelids seemed swollen saying ther may be "something else going on". I did not think it was swollen at the time so he didn't push it. :-)
I am glad you have specialists who seem keen to figure things out with you.
Corrie
I get occasional ptosis but never found it to be related to MS so I hope my neuro can shed some light when I see him in a couple of weeks.
Like Cann, I wonder if brain lesions could be the cause. My neuro asked me last year if I thought one of my eyelids seemed swollen saying ther may be "something else going on". I did not think it was swollen at the time so he didn't push it. :-)
I am glad you have specialists who seem keen to figure things out with you.
Corrie
Your response is very helpful and I do agree with your statement. Yes, the ptosis is new with worsening of my symptoms along with fatigue. If the LP is positive than I'm very confident that this is MS since MG treatment has not made any difference. I truly appreciate your feedback and response. I hope you are doing well with you MS.
Is the ptosis new for you? Perhaps there are lesions causing this that have not shown on the MRI yet?
I have MS and have many times come across MG during my never ending google searches of my symptoms. My eyes are being effected in many ways and I have read a ton of literature on the nerves and muscles of the eyes.
My MS has been causing me to get a worsening of double vision. The cause if this is a disturbance (or lesion) effecting the forth nerve .. There is nothing showing this on MRI yet but the damage is done. The nerve runs a fair distance so I will never know which lesion is causing this.
So the problem this causes me is my muscle on the bottom of my right eye is not pulling it down correctly.
I am wondering if this could be your cause as well... I think the third nerve controls the eye lids. Mine is the fourth nerve.
I have no other reason other than MS to be having this problem ... Unless there is more to my story that is not known.
Cann
I have MS and have many times come across MG during my never ending google searches of my symptoms. My eyes are being effected in many ways and I have read a ton of literature on the nerves and muscles of the eyes.
My MS has been causing me to get a worsening of double vision. The cause if this is a disturbance (or lesion) effecting the forth nerve .. There is nothing showing this on MRI yet but the damage is done. The nerve runs a fair distance so I will never know which lesion is causing this.
So the problem this causes me is my muscle on the bottom of my right eye is not pulling it down correctly.
I am wondering if this could be your cause as well... I think the third nerve controls the eye lids. Mine is the fourth nerve.
I have no other reason other than MS to be having this problem ... Unless there is more to my story that is not known.
Cann
Kyle,
Just wanted to update you. I've been off work for over 2 months now due to my symptoms. My Visual evoke potential was abnormal. I was not responding to Mestinon for the possible Myasthenia gravis and my MS Neuro took me of it at my first visit. My symptoms of extreme fatigue/lack of energy which causes the ptosis to worsen was not different with or without the med. I look drunk like and feel drunk like at my worst with some balance problems. I've been told that few people with MS get ptosis if lesions are frontal resulting in fatigue. Going to have LP done 5/2. I pray for some answers so I can get treatment. My gait is not getting any better and spasticity with increase walking has worsen some. I'll let know final outcome. I don't know what my doc plans to do if LP comes back negative. Also cervical and thoracic MRI without constrast negative for MS lesions
Just wanted to update you. I've been off work for over 2 months now due to my symptoms. My Visual evoke potential was abnormal. I was not responding to Mestinon for the possible Myasthenia gravis and my MS Neuro took me of it at my first visit. My symptoms of extreme fatigue/lack of energy which causes the ptosis to worsen was not different with or without the med. I look drunk like and feel drunk like at my worst with some balance problems. I've been told that few people with MS get ptosis if lesions are frontal resulting in fatigue. Going to have LP done 5/2. I pray for some answers so I can get treatment. My gait is not getting any better and spasticity with increase walking has worsen some. I'll let know final outcome. I don't know what my doc plans to do if LP comes back negative. Also cervical and thoracic MRI without constrast negative for MS lesions
Kyle,
I read article and very interesting. You are amazing and I thank you so much
I read article and very interesting. You are amazing and I thank you so much
Because MS impacts the central nervous system anything and everything is fair game :-)
Thanks for your quick response. I will check out the ncbi info. Yes I'm seeing a neurologist and neuro-endocrinologist. I've been told that my case is "interesting and challenging". I think its not one condition causing these symptoms. I just wasn't aware of MS causing Ptosis which worsen so bad as I fatigued and improves with rest. However I also couldn't find info on MG causing right sided weakness ( resembling stroke like ) with occasional mild spasticity with exertion and hyperflexes of the leg. I also have significant heat intolerance
Hi Massie - Welcome to the group.
One thing I've learned is that having MS does not excuse me from having other health issues. It is possible to have both MG and MS. I found a study from 2009 (http://www.ncbi.nlm.nih.gov/pubmed/19934567) in which of 1718 people with MS, 6 also had MG. So while it is possible, it is also very rare.
There can be significant symptom overlap between the two. Your symptoms seem to point more strongly towards MS, but the lesions on your MRI seem to point to MS.
Are you seeing a neurologist? What do they say?
Kyle
One thing I've learned is that having MS does not excuse me from having other health issues. It is possible to have both MG and MS. I found a study from 2009 (http://www.ncbi.nlm.nih.gov/pubmed/19934567) in which of 1718 people with MS, 6 also had MG. So while it is possible, it is also very rare.
There can be significant symptom overlap between the two. Your symptoms seem to point more strongly towards MS, but the lesions on your MRI seem to point to MS.
Are you seeing a neurologist? What do they say?
Kyle
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