Hi and welcome,
Some of what you mention can be suggestive of a neurological condition but to be honest, you just have far too much going on and in such a short time frame [it's moving around, sometimes unilateral, sometimes bilateral, 30/60 seconds etc] that i doubt MS would be at the top of your list of possible causes.
I'm totally confused by this......."I had what sounds to my neurologist like, a tonic clinic seizure.........one was in a Kroger bathroom floor.... Yuck. Ha! (Glad I laid my coat out beside me before that one happened so I didn't 'come to' directly on the nasty floor).".........are you saying your coat was already on the floor OR that you actually knew the seizure was coming and placed your coat on the floor before it hit?
MS is a disease of the central nervous system, theoretically MS can cause symptoms to develop anywhere and whilst MS is unique to the individual, there is still a pattern of symptom development and what you've described doesn't sound consistent with MS. I would definitely suggest you contact you neurologist to discuss what's been happening but try to be open minded, MS has many mimics and it really may not be MS!
Hi Mallori -
I agree with JJ that it's unlikely that MS is causing all your symptoms. As it's entirely possible to have MS and other medical issues, it's possible that MS is cause some of your problems.
To find out you should see a neuro that specializes in MS. There are a lot of blood tests, MRIs and other tests involved. Most important is the clincal exam. An MS doc will see things that untrained eyes will not.
Thank you both for taking the time to read my super long post and for your responses. I'll definitely remain open minded going forward. I made an appointment with my neurologist, but haven't received the paperwork yet. It's so frustrating to have to wait months for an appointment when I know most of my symptoms will probably be gone or lessened by then.
I do have Babinskis reflex in my left foot which was not there when I first was evaluated all those years ago so I feel like there is something wrong. Just have to narrow down what it is.
In response to your question supermum_ms : yes, I did always feel the 'episodes' coming on. I would feel my heart racing, very nauseous (hence, the bathroom), start seeing lots of those lights, and lightheaded like I was going to pass out. So, I ran to the bathroom, in that instance, and dropped my bag and coat on the floor, then, ended up sitting down and falling over onto the coat, when I came to, I was jerking my fists and knees up towards my face and had to take a minute to collect myself and remember what had just happened and where I was.
I went to get a cold towel from the sink and was a horrible yellowy green color with beads of sweat on my face and after my mom took me home, slept for hours, very tired.
Whoops! I'm still getting used to this board. I responded to your question below. ;) thank you, again, for your response!
Something weird is going on. If you have an appointment with a MS Specialist it normally takes months to get an appointment. I have nothing more to add to JJ and Kyle.
Thanks for the response, Alex! :) yea, something is definitely up with my body the past few weeks. I'm trying not to stress out about it because I know, no matter what it is, that stress will only make it worse. Hopefully, when I get in with my neurologist, he'll be able to give me some type of answer. Thanks, again! This is a nice community you all have here! :)
It sounds like you probably experience warnings called 'partial seizure' leading up to the tonic-clonic seizure. Babinskis reflex is actually associated with other conditions other than MS, seizures and spinal cord conditions both are but i don't know enough to give you any specifics, sorry!
It's always a good idea to remain open minded, symptoms of MS overlap many other medical conditions, and with your history of seizures which is very uncommon in MS (only around 2%), it's just more likely to be related or something else associated with epilepsy, which is 3 times more common than MS is.....
Try to keep a diary of before, during and after these episodes, so even if they are improved when you get back to your neurologist, at least you'll have some evidence of the frequency, time of day, situation specifics and exactly what you experience etc.
Try not to worry too much if you can, as you said it doesn't help. It might be helpful with getting things moving quicker to contact your neurologist clinic, as you were diagnosed with tonic-clonic seizure episodes and already have a prior history there. Let us know how you get on
Reading your additional info made me think of migraines. I used to get them when I was in high school. They were aaalways marked by a series of "warningss". In my case the most prominent were visual disturbances. These were often accompanied by nausea.
I suspect that as wityh MS, migraine symptoms can vary greatly from person to person. It seems like it might be worth looking in to.
Hello again everyone! Thank you all very much for the kind responses. I really appreciate them.
I got in to see my neurologist much quicker than expected, due to a cancellation (score!) and saw him a couple weeks ago. I had a list of everything I'd experienced since seeing him last, in 2011, I believe.
He looked over the symptoms, asked questions and did an exam. I had left sided babinskis, left sided weakness and brisk reflexes on my left side.
He also spent a good amount of time all up in my right eye with a light before asking if I ever had double vision or if I just see the lights, as my only visual symptom. I told him I'd had the one, very brief incident late one night recently, with slight double vision, but it went away by the next morning and I chalked it up to fatigue and eye strain. He said that my right optic disc/nerve appeared swollen.
Then he sat me down and very slowly and carefully told me that he's not the kind of doctor to not tell a patient what he's thinking, and right now he's thinking MS is the strongest possibility. He said we'd scedule tests and then meet back and discuss findings.
I asked him, of course, what else it could be if not MS, he mentioned Lupus, Lyme (asked me about ticks- haven't been bit since I was maybe seven or so? I'm 24 now.), Thyroid disease (asked me about my levels and I told him the standard tests came back normal in January), S'jorgens, B-12, "some kind of inflammatory tissue disease".
I went and had evoked potentials done for my vision, though I don't know the results of that, yet. And, I had a brain MRI which came back clear, at least from the radiologist who initially read it- not sure if my Neuro has looked at it yet.
I'm scheduled to have a C & T spine MRI Thursday, so we'll see how that one comes back. I have a feeling, if it IS MS, that it might be more likely to show up on my spine anyway, because Ive had L'hermittes a couple of different times in the past. I'm Also having problems with, what I guess you would call spasticity? My leg muscles, primary left, constantly spasm/cramp/twitch especially at night and my left ankle and muscles are stiff and very.... Muscular, right now. Ha! They're just tight. I had read that these are symptoms that are more associated with spinal involvement, but I could be wrong about that... We'll see!
I went to my PCP to get some blood work done, don't have those results yet either. I believ she checked for Lyme, Thyroid, B-12, Lupus (ANA?), Magnesium, and maybe a couple others I'm not remembering.
Is there anything else you all could recommend I be checked for, specifically or any advice you would give going forward? Thanks for reading! :) Sorry I wrote a lot, again.
Got some of my blood results back today:
Vitamin D, 25 Hydroxy: 44
Haven't gotten ANA or Lyme yet, I'm assuming they take a while longer.
Doc says everything looks fine, so far.
Anybody have any thoughts on the B-12 or TSH? As in, are the standard tests normally reliable to rule out any issues with those that could be causing my symptoms?
Ana came back positive today. Guess my doctor will order more blood work to see about Lupus? Anybody know what other things could cause positive ANA?
Also- my Lyme came back as .25... I don't know what that means, though? Anyone have an idea?
ANA just mean inflammation. They do an anti DNA to rule out Lupus. They normally check for Lupus, HIV and Neuro syphillus. Also thyroid and lyme. I do not know about the lyme.
Sounds like you have good doctors. Sometimes they do a Lumbar Puncture to look for MS.
I showed MS on my first MRI but I had tests for two years that all showed MS and were negative for everything else. My LP got me my diagnosis.
Thank you for the response- I appreciate it! :) I hope you're doing well!
Yes, I'm hoping that'll be the next thing my PCP does, is the more specific blood work to see if DNA lupus test comes back with anything, or the S'jorgens one- both of which are things my Neuro mentioned.
Do you, ( or anyone else) know if Lupus, S'jorgens, or thyroid disease can cause the abonormalities on neurological exam?
Also- I think my B-12 was in the mid to upper 'normal' range (594). Would this rule out a B-12 issue causing symptoms?
I have a c & t spine MRI tomorrow. Haven't had one of those ever- just brain, which have both been clear.
I hope everyone's doing good!