I've copied the below from a post I made the first of September. I also thought I might have had seizures, but now I'm leaning towards an MS flair. I didn't go to the doctor and I now question that decision. Some of our symptoms are similar (goosebumps for ex.)
Hope this is helpful.
[At Friday night's football game I noticed my feet were going numb . . . nothing unusual. Immediately after the game, we left for a roadtrip. We were following a truck, in the rain on a winding road. I became very sick. I thought I was carsick, which is unusual. I couldn't look out the window, because of the tail lights of the truck. About thirty minutes into our trip, I developed right side "weakness". It felt like every cell in my arm, leg, and scalp was vibrating or had chill bumps. (This is also something I've had about a dozen episodes of over the last year. They last about two minutes and are followed by fatigue.) On Friday night, the episodes would wax and wane, but always came back. They were lasting much longer than in the past. We finally stopped. I was still trying to blame it all on being carsick. Snuggled down in a hotel, I felt better. I fell asleep, only to wake an hour later. The nausea was not so bad, but the other symptoms were intense. It continued through the night. We ditched our trip and returned home, where I slept the entire day. The symptoms lasted about 10 hours. As my head cleared, I realized that I had not been able to carry on a conversation. I had also been unable to make decisions. When my husband asked, "Do you want to go to the doctor?" I didn't know what to do. I have very little residual tingling now. I'm wondering if these episodes were seizures, strokes, MS relapses, a complication to the LP or pain medication???? What next? I hate to contact the neurologist, so I feel stumped.] excerpt from sep 2
Thank you, so much, Sherry!
It makes me feel better to think someone else might have the same sort of experience (or might be bonkers, too!).
I hope you're feeling well,
It is possible that we're both bonkers, but at least we're not alone : ) It's amazing the peace of mind I have now that I know I have MS . . . that sounds so odd (lol). The fall temps have been the best med. I feel almost human again!
Sorry . . . took a side road (happens alot anymore).
Back to the seizure thing - with your meds, I assume you actually have had seizures? Is that part of MS? Although I thought there was very little residual "aftershocks" from my event, I have continued having that bizarre sensation in my arm and it is usually accompanied with nausea. Are you able to "sense" that something is about to happen?
I know this paragraph is random . . . hope you can make sense of it???
I guess I hadn't gathered that you had been diagnosed. I want to congratulate you, but that's so altogether inappropriate. I assume you know what I mean, though. I'm glad you have your answer, and have moved ahead to treatment. Good for you!
About the seizures -- yes, I believe I have had them. I also have had a few psychogenic seizures, which do not originate from the brain. I can easily tell the difference. With the real seizures, as I experience them, I have a sense that something 'very odd' is about to happen. In April, I had the last one, and I thought perhaps I was going to have a bad migraine, like I was having a strong migraine aura. I was compelled to lie down. I felt an urgency to "do something" to prepare myself for what was about to happen. And my tongue felt kind of funny. Weird taste. Hard to explain. Afterward, I was exhausted. I was resigned to the sofa for the rest of the evening. My kids said I looked pale. All the 'jolt' was in my head, though, not any other part of my body, like last night. Which makes me think last night was not a real seizure. I don't know what it was. The head part felt like a seizure, but I felt it in my foot, too.
That's why I'm kind of nervous about saying anything to my doc. I'm thisclose to being sent to the looney bin. I'm not diagnosed yet. I do know that seizures are an uncommon symptom of MS. But they can be a symptom. And I have only been having them for the last 2 and a half years. Which my new neuro says is very odd. To suddenly, at my age, start having seizures. And migraines. It usually starts in childhood or teen years.
Has anyone told you that you have seizures?
I know I should say something to my doc. I'll call his office Monday. But I'm nervous!
Oy! My paragraph is even more random than yours!
My former neurologist suggested that I was having migraines or seizures - even mentioned psychosis (sp?) . . . because he definitely did not think I had MS. This conversation took place with my husband, while I was laid out (with my back to everyone) just having had an LP. The event I described happened three days after the LP, and I could not bring myself to call the neurologist, so I have no idea what it actually was . . . other than frightening!
Two weeks later, I received a very generic call from his nurse saying, "Your LP was abnormal. You have MS and need to come in to discuss treatment." I picked up my records yesterday, since I do not plan on gracing his door again (I've left out all of the dismissive attitudes and conduct that scream malpractice). To get back to the point . . . I have test results suggesting MS, but have not actually had a doctor say it to my face. I'm seeking an appointment with an MS specialist and hope to get answers then.
To quote you "Oy!" . . . I really vented on this one . . . sorry.
Thanks for listening.
Oh, I hear you, sister. I have actually had a neuro refer me to a psychiatrist, who then told me the neuro had not done enough testing, and the psychiatrist thought I had MS. That was when I really began to start investigating the symptoms and jumped on the forum here. Dagnabbit, this process is so frustrating.
I have positive Babinski's, hyper reflexes, increased muscle tone in all four limbs, and my LP protein level was just out of normal range at the ER once. Those are my objective 'signs.' I have lots of 'symptoms.' I have had episodes of severe leg weakness, that left me unable to walk. Still, I can't get a Dx, because I don't have lesions that show up on an MRI.
Maybe I don't have MS, but I have something. I want to start treatment, before these legs get worse. Last night was a shocker, kind of scary. I thought I was done with those nights. To quote you quoting me, "Oy."
I just realized your event was Sept 2. Was it this PAST Sept? Ew. Oy! This is crazy. Why is it so hard for a neuro to take a leap and diagnose a patient? Idiots!
I can vent, too! We're allowed here.
Yes . . . all of this has taken place this month.
To vent some more . . . I actually had an MRI in 2006 that was reported clear. Ends up, the neuro did not read it (and obviously the radiologist didn' either) - but it also showed lesions. For over a year I've been telling myself that I had no reason to "feel" these symptoms - when I actually did have all the reason in the world. After all of this . . . the neuro was still dismissive . . . even said to my hubby concerning the unread MRI . . . "Well, that's not my fault." I felt like I was listening to my 7th grade students - not an educated professional (I use that last term loosely).
What were levels on the LP you mentioned? My LP results were in the paperwork I picked up yesterday, and I'm trying to make sense of them.
I just had a plain old LP. The protein level was 48. Normal for that hospital is up to 45. Everything else was normal except the glucose, somehow was a bit low out of normal, I think, but it had to do with when I ate, the ER doc said. I can't remember the number.
The MRI thing is -- OY! --deplorable. No wonder you have symptoms! And no wonder you're angry! So unprofessional.
I've gotta go see my two youngest in a talent show at our church's Oktoberfest right now. Will catch up later, OK?
sorry to jump in her but what are lp levels ? By the way I offered to see a psych and got the same response as you zilla !!!
I'm still investigating the LP (lumbar puncture) information. One thing that was tested for was "bands". Something like 90% (can't recall exact percentage) of MSers have bands. Another thing tested was IGG levels. These protein levels are also elevated in a high percentage of MSers. If I'm reading my lab report correctly . . . I have no bands, but IGG is well above the expected range.
Hi wasnt sure what you meant ! I,m in the uk and we dont have access to test results in the way that you do ! I had a lp three yrs ago but that was in normal ranges or so I was told havent had any tets since then I think its a funding issue here unless you go private and I don'rt have private insurance so stuck really with no dx other than the one ive got . Is it early hrs where you are by the way ?
It's just after noon.
What diagnosis do you have?
Hi wasnt really sure what time it is where you are its 7.40 pm where I am ! Hmm diagnosis if you can call it one is neurological gait disorder with action myoclonous of unknown eaitology ( can tspell it) lol more recently they keep cooming up with things like dry eye syndrome chronic constipation, reflux , They keep adding dxs to all the separate bits but I,m convinced there all relate dto each other Presntly seeing a lung specialist after having breathing issues he doesnt no the cause of that either apart from he said its something to do with repiratory muscles which internally are controlled by the brain !! Due to have another lung function in oct . Sense of humour waxes and wanes at times got to admit . I think its bad when like you youve got to look up the signifcance of your own tests !
A former doc had put me on Topomax several months ago. I had a somewhat similar experience about 3 weeks into the med. The doc siad I wa shaving "paraseizures" form the topomax. I have never had a seizure in my life. Got off the toptomax and never had it happen again. How long have you been on it? My story is probably irrelevant since you do seem to have a seizure disorder and I do not, but I thought it bore mentioning.
I've been taking a pretty high dose now for two and a half years. I have read, though, that even if you don't have seizure disorder, that if you skip enough doses, and are sleep deprived, and drink alcohol, that type of thing, you can evoke a seizure. Or pseudosiezure, maybe. Not sure. Oops...just read your post -- paraseizure.
Did you just get the jolt in your head, Penn? Just wondering? Was it strong? I bet is was pretty alarming.
As some of you know I have had problems with seizures and they never have figured out why. I do know that always before I have one I'm usually very tired, or very stressed out, or combination of both.
The last time I had one was the first week in August and my doctor upped my lyrica from 2 x day to 3 x day (75mg). I'm hoping it has worked because I have'nt had one since.
I would still like to know what really had caused them. Is it a symptom of MS?
WAIT- You know, I think I've had COMPLEX partial. Oops.
Good for you for going to see a psychiatrist! I think that was one of the best things I've done lately for my health. Mental and otherwise. It gave me the validation I needed for the 'defective neurologist' who had 'dissed' me. And I was able to talk through some things.
I sort of hadn't expected him to say, "I think it's neurologic." I half expected him to say, "See you next week." But, it was great to be validated, and to be able to know he was going to send a report to the dufus neuro, saying, 'You didn't do enough testing, Stupid. She's fine, you've got the problem.'
So good for you. I try to encourage others on the forum to use psychiatrists in this way, too. Perhaps you can spread the word. It worked for you! Take care!
Chris that is a scary event! I've never had any thing of this nature. But wanted to send you my wishes and hugs
Thank you, Jazzy! You are always so sweet! I haven't talked to you in a while. You been OK?
To simplify the answer to your question "what are lp levels" when you have a lumbar puncture (LP) aka spinal tap, they take some cerebral spinal fluid (CSF) and test it for glucose, protein, CSF red blood cells
and CSF white blood cells plus they do a CSF IGG SYN/INDEX which tests the amount of CSF IgG produced in the central nervous system.They also test for oligoclonal bands and for CSF MBP which is myelin basic protein. The IgG synthesis rate, CSF and iGg INDEX CSF are 2 formulae for estimating the amount of IgG produced in the central nervous system. An increased synthesis of IgG provides SUPPORT for the diagnosis of Multiple Sclerosis, but it is not an dx on its own merits and all other tests have to be taken into consideration. Sometimes the CSF has no "bands" and a person can still be diagnosed with MS based on other test results and/or history of symptoms.
I have already been diagnosed with MS based on my test results and I am posting the results of my CSF tests in a new thread along with the reference ranges so people with MS that have already had their LP.CSF results (or still waiting for a dx) can compare if they want or it can even help in understanding their own results if no reference ranges were given.
How scarey! I have not had any seizures or feeling like you explain but I am sorry you have this!!
Hi, I have posted before that a large percentage of people with MS have abnormal EEG's. I wish I remebered the number. What I remember is 40% which is higher than the general population. The siezure rate in MS, though, I do not think is higher than the general population. Zilla, I agree that it sounds like a partial seizure. If your consciousness was affected at all (your awareness and memory of the episode) it would be classified as a "partial complex seizure."
I certainly think your doctor should hear about it. However, FATIGUE is one of the biggest, if not the biggest (other than missing meds) trigger of seizures. Bad Girl! Bad Girl! You were up practicing twinkling your toes weren't you?
I'm new to this group and am thankful for such candid responses. 18 months ago while taking my 2nd law school exam, something felt like it hit me in the head, my left side was numb, I was very lightheaded and ended up in the hospital for 10 days. I was diagnosed with neurocardiogenic syncope, but was told that was not all of the diagnoses, that there may be something additionally wrong. I've been seen by good cardiologists and have had every test for the heart, and all are normal. I had to have these tests done before neurology would see me again. I'm still having and have had these symptoms: headaches - 30 per day - they come and go quickly; goosebump like bumps going down my legs from time to time; lighheadedness; numb face arms, legs from time to time. I also have a tendency to have low blood pressure.
I had a 24 hour EEG done 3 days ago. I had an EEG done 18 months ago - and surprise, no one told me the results. The tech said I had a "spike" which is seizure related. I have another MRI scheduled next week and had 4 done 18 months ago.
Can anyone tell me if they experienced these same symptoms? I get tired, but think that is just because of the schedule here at school? Thanks for anything.