My Scariest Symptom So Far

[melack01]

Awhile back, thankfully it's over, I started getting symptoms that made me question my sanity. More than the confusion and lack of focus I've already been dealing with. This was affecting behavior. I went from making noises, hissing, clicking etc., to babbling and speaking gibberish. I was totally aware of this and would get upset which would make it worse. Nobody saw it at this point because I was alone. After a few good arguments with myself full of babbling and crying, I told my husband. A lot of the time I could fight with myself and not make noises. These behaviors seemed to be triggered by fatigue, stress, or change in light (going from a dark room to a lighted room or vice versa). My husband finally saw an episode and just hugged me, which did wonders to calm me down, that caused me to laugh and cry at the same time. No episode lasted more than a few minutes. My behavior was very confused and infantile. I dropped my soda in the car and started an episode because I couldn't figure out what to do first. Put the things I was holding down, pick up the soda, ask for help, what? The car door closed on my foot as I was getting in. In retrospect it didn't really hurt. At the time you would have thought I had been severely injured. It took a few minutes for my husband to calm me down.

Before you say talk to your neurologist, I did. He got me an appointment to see a neuropsychologist due to this and family history (grandmother had premature senility starting at 55 and my sister (62) had just been diagnosed with early onset Alzheimer. I am 57). The tests showed I had very good memory and extremely poor concentration and focus. But at the end she said no to Alzheimer (yay!) and said my behavior could be explained by what she saw on my MRI.

This more than any other symptom I've experienced scares me the most. It's gone now and I really hope I don't get it back. I felt like I was losing myself and turning into somebody else.

[CalfeeChick CommunityAmbassador]

I'm so sorry for your episodes. That has to be so frightening. I took care of my mom and mom in law their battles with Alzheimer's. I'm not a doc, but it seems to me your episodes are definitely stress event triggered and could be many different neurological reasons. I understand your fears. Until MS, Alzheimer's was my biggest fear. Amazing how MS changes perspectives. Please come here, keep in touch, best to you. Lynn

[Raingrrl]

How scary for you @melack01! I hope that it doesn't return. Its good that you know some of the triggers so that maybe you can find some ways to prevent it.

[Morllyn]

I am sorry you had to go through such confusing symptoms. Hope they never come back.

[GerriG]

Wow, that's amazing, I just recently had that type of episode that lasted nearly a week, and it was truly scary. I totally empathize with you on that. My doc keeps mentioning dementia, we'll see what the next tests come up with. I hope it doesn't happen to you again!

[Iona60]

melack01 and GerriG I had one episode of speaking gibberish. It's called aphasia. Mine lasted for several hours. I was in an exacerbation and also had a migraine. I kept trying to tell my husband to get my migraine medicine. Once he finally understood, and I took some, it went away. The neuro said that it was caused by the migraine. I've never had it again, but he convinced me to go on migraine prevention medicine after this episode.

[Iona60]

And yes, it was the scariest symptom that I have ever had.

[erash]

melack01 could this be PBA pseudo bulbar affect? Almost sounds as if you are having out of proportion emotional responses that can be indicative of PBA.

What did the neuropsych see on the MRI that she thought explained your symptoms?

Scary, I bet

[melack01 in reply to erash]

I was thinking possibly PBA also. She didn't mention what she saw but when I saw her I hadn't been diagnosed yet, was waiting for the results of the lumbar puncture. I didn't see anything about it in her written report either.

[greaterexp]

What a relief to have some reassuring news after those scary symptoms! I hope it doesn't happen again, but you are armed with some information about what is causing this and what to do. Your marvelous husband's hugs have some terrific medicine in them! Give him a big hug from all of us for being so supportive.

[melack01 in reply to greaterexp]

Thank you greaterexp

[sargeheel]

Hi! My name is Terri and this is my first time writing. I was diagnosed with ms 5 yrs ago, but misdiagnosed for at least 15 yrs prior. I am 57 yrs old and still trying to work. The scariest symptom I have ever had is what you have described. I also have Alzheimers in my family and was concerned that I may have early onset. One day my coworker stumbled on the stairs and just lay there not moving. I could not speak English! I just babbled incomprehensible syllables even after she got up. Thank goodness she ok!

I do have aphasia, but this is was different. It has happened several times usually when I am tired, stressed or sensory overload. Thank you for bringing this up because I thought I was alone with this symptom.

[WAshingtongirl in reply to sargeheel]

sargeheel , we hate having to welcome newcombers to the MS Club, but we are happy you are here. As you can tell, we talk honestly about anything. We hope you feel at home here. Welcome, Terri! 💕

[sargeheel in reply to WAshingtongirl]

Thank you for all the support!

[rlh1974 in reply to sargeheel]

sargeheel I want you to know, on here you are never alone!!!!! Always share! Like melack01 . you will always be surprised to find someone has gone through it. If not, you will get the equivalent of @melack01 husbands hug. All though virtual.

So, My 2 cents. I have had that once. scary as hell. it was just before an MRI and sure enough I was in an exacerbation. I had 2 new lesions on the spot where the brain meets the spinal cord. Oh the brain stem! Forgot what it was called. This stupid stupid monster MS is so misunderstood, even with all the research. Maybe someday someone will figure it out!!!!

When things like that happen. Everyone in the house just shakes their head, and says I hate MS! I normally get a hug or two. My daughters hugs seem to be the best medicine!

Love you all!

Rob

[sargeheel in reply to rlh1974]

I always say stupid MS!!!!! I understand that!! So glad I finally spoke up! Thanks!

[melack01]

sargeheel I also am glad to not be the only one. I was also glad when they said no to Alzheimer. It runs in my family, in fact my older sister was just diagnosed with it and she is only 62. Like you I am 57, will be 58 in October.

[sargeheel]

Thank you for sharing. MS is scary enough. It is very difficult to talk about it with friends and family.....they are supportive, but can't grasp the variety and severity of symptoms that go with MS.

[rlh1974 in reply to sargeheel]

sargeheel you don't get it, until you get it.

[sargeheel]

unfortunately...

[melack01]

Update...unfortunately it's not over. Had an episode Sunday night out of the blue. Was almost hysterical before it was over, wet myself. Luckily my husband was able to calm me down. I tried to talk to him and just garbage came out. I had been in bed when it all started , had to sit up for awhile before trying again. Monday I was jittery and tired all day. Doing okay today. Trimmed my yard, mowed my mother-in-laws yard, and went to play darts. Part of me is still skittish, wondering when it's going to rear it's ugly head again.

[jackiesj]

My heart and prayers r with you.MS and its changes from moment to moment r not easy,Tears are a blessing to release stress.l am curios to what the MRI says.How wonderful to have a husband that knows to hold you in times of need and joy.pls remember you are not alone.There is a side effect(I forgot the letters to it) that can account for this behavior.PBS or something to that extent.your thoughts come across completely fine and we understand you perfectly.I hope that helps for you to know.It is aweful feeling to seem like the only one on stage at the time!How do others face the unknown?What will happen next is a hard one.best wishes.

[melack01]

Thank you for your kind words. This gets worse when you're on a psych ward for depression and when it happens you have to hide in your room temporarily because you don't trust them to believe it's the MS.

[30yearfighter]

melack01 hate to hear of your incident but it made me feel much better. I am currently in a flare and this past Saturday my husband got me out and we went to the farmer’s market, had lunch and then stopped by a local paint store. I guess my body had gotten hotter than I thought plus I was extremely fatigued but when we got back in the car I had my own strange incident. I remember kinda closing my eyes and when I opened them all the sudden I was just babbling away making no sense what so ever. Then I was trying to figure out where we were and I couldn’t figure out where my husband was driving because I had no clue where we were or how to get home. We were less than a mile from our home but I was totally lost. It was the weirdest feeling because I really wasn’t in my right mind. Scared the beejezus out of me.

So glad that we can share our weird out of body events on here and nobody thinks we are crazy.

[melack01]

That was probably some of the worst I've gone through. My husband has learned to figure out what I'm trying to say. I speak less in public settings because of it.