I am STILL not diagnosed, though the MS question remains. Currently 'they' are saying "maybe basilar migraines".
I feel so vile recently I truly don't know what is happening. I had a spell in hospital last November, and the tests they did were inconclusive : I had an MRI to compare to the previous MRI, but they couldn't make up their minds about that either, as the 1st MRI was done on T2 and the 2nd on T3. Result, "The studies are not exactly comparable but both studies show multiple WML bilaterally. There are slightly more lesions on the current study, which may be technique-related. Despite the number of lesions, the corpus callosum remains intact. Correlation with other paraclinical studies would be rquired if demyelination is suspected".
They didn't do a LP as my neurological tests were essentially "normal" bar the dizziness/unsteadyness thing. The tingling limbs were also ignored and put down to "complicated migraine".
I had a good run for about 6 weeks, during which time we moved interstate (glad I was well for THAT!). Four weeks after moving however, it all started again. Worst thing that causes me the most distress is this blasted lightheadedness/dizziness. Also my legs seem to be getting tight in the thigh muscles while it is occuring, though that may be panic on my part? Not sure.
This current 'attack" has gone for 6 blooming weeks, with only a few days of relative normality. New with this attack are days, without warning, of the most overwhelming fatigue. Getting out of bed seems like mission impossible. I have NEVEr felt anything like it.
So the question:
is that a typical MS thing? Do MS 'attacks" fluctuate day to day? Can you have, say, 4 awful days then an ok day then back to awful again?
the whole thing is getting me down really badly. I am a single mum of a 13yo with ZERO help nearby. My mother finally came and helped me last week (she lives 3 hours drive away) - this is the first help I have had in 2 1/2 years of this.....she was very unsympathetic though (despite the large pile of dr's reports in front of her) and reckoned it's "all in your head" (HA!) and 'go for a walk and you'll get better"..............
PS, seeing a top neuro in Sydney in May for a total rethink and re-assessment.
Oh, i just thought I should add my symptoms a bit better? seems others do which obviously helps the discussion.
The lightheadedness/dizziness - a sense that if I don't hang on to something I will fall. Much worse in open and / or crowded areas (nothing to hold on to)
legs - feeling increasingly heavy. thighs seem tight.
Tremor - has occured a few times without warning when I am feeling particularly bad. In both legs, but only when lying flat on my back. Also in right arm, when attempting to 'do" something (eg, give me you arm so I can check your blood pressure, says the nurse, and my arm starts flailing around)
Fear, yep. Big time.
Fatigue, as I said above.
Get up to pee repeatedly at night time, though not during the day.
hi there im 30 years old and your symptoms and they way you are describing it sounds exactly what im going through now . i had 6 weeks in dec till th 28 th jan then it came back and its still here so i would say i have had it over 2 months its very draining . i remain undiagnosed too and it can really get you down . its not a nice place to be is it ? anyway im off to neurology on monday so cant wait to see the doctor i really hope i get some help soon for these terrible symptoms . i hope you to will get some answers take care x j
I posted just recently about how i count my episodes, still not got a handle on things really, the school of thought is that a true relapse lasts for a minimum of 24 hours though 48 is more likely. It starts getting murky when you keep having psuedo-relapses (not real) due to external and or internal temperature hikes, anything that pushes your core body temp up, be it a hot day or a shower etc. They are short lived, resolving back to base line once your core temp has cooled and you've rested.
You can also have psuedo's by pushing your self beyond your limits, i do this to my self all the time, i know i'm carp due to going beyond where I should, its just a reactionary response and not an indication that my brain is making holes again.lol Now when it comes to fatigue, for me i think they are my biggest indicator of a mini episode, i cant really aequately explain the difference in the daily fatigue and the ironed flat fatigue, its just very chalk and cheese.
With daily fatigue i can with a bit of a wiggle get through the day, i use to be able to keep my energy up enough to run after 2 Autistic preppies (intergration aide), i worked school hours and then came home to my own, a short nap before i'd make tea. I think of that time as the good old days, now my daily fatigue only gives me 3 hours before i hit the wall, it rules everything i am able to do. To ignore its calling is a gaurantee that i'll start walking badly, talking like an English is my second language and struggling to keep my brain cells in line.
Bad fatigue is so so different for me, i'm a train wreck, my body will not give me the energy to do much more than breath, it is this way for days and days until it lifts. I am at the murcy of the fatigue, nothing works as it should and there is just no faking it. I'm thinking these bad fatigue episodes could be my relapses but i'm still not sure it matters at this stage of the game, because between the psuedo's and totaling my self by pushing beyond my limits (which is mainly because i'm stuborn and still trying to live a life as close to where i was a year ago lol) if they are relapses then i've got no way to control them, they just are what they are.
Oh well i dont think i helped, all i can say is work out your balance, your limits and what works for you, it may take some time cause the goals keep changing but once you know your self it can make a difference.
I found your pm but its blocked and i cant reply, i did try so please dont think i'm being rude lol i dont have you blocked but still i've tried different ways and its not getting through to you, i'm sure others think i've ignored them too. i'll try again later
Hey, Kiddo! I am sorry your docs seem hung up on an improbable diagnosis. Basilar migraines for 6 bloomin' weeks??? Also, the stiffness you are having in your legs sounds suspiciously like spasticity. Are your reflexes normal NOW? The need to be rechecked and maybe you'll kick one of the dodo's in nuts and he'll start thinking again.
I would say that a lot of us vary in our baseline - meaning that when not acutely in a relapse we have good days and bad days. Just how "good" and how "bad" they are seems to be quite individual. But, yes, people with MS can have surprisingly good days - during which we are quite likely to overdo it and pay heavily. That may be responsible for your and JJ's really bad times. We overdo for a lot of reasons, and not just stubbornness, JJ. One, we're always behind with stuff. Second, it feels SO good to do stuff, anything! But, payback is a b*tch.
What you are describing with the unsteadiness does not sound like light-headedness (generally associated by the medical profession as being about to faint). I realize though that a lot of people with vertigo feel like their head is disconnected and floating around somewhere else.
If your arm is flailing, I wonder if it is a tremor or another type of movement disorder. Tremor is a rhythmic, to-fro movement. Flailing sounds like ballismus or something. There is a site called wemove.org which has descriptions of all the different kinds of movement disorders. You might see if any fit what you go through.
I strongly recomend that you get a video of the arm movement. That would be priceless to show a new neurologist. Our bodies don't always tremor, jerk, or spasm on cue.
I also think another opinion is a fabulous thing to do. I'm so pleased to hear that that is coming up.
And, yes, fatigue can lay you flat. That's the kind of fatigue I have most days. The vertigo makes fatigue much worse by overloading consciousness with the additional chore of keeping you upright. How is your balance in total darkness?
Stick around, and sorry that your Mum is not empathetic, nor sympathetic.
Balance in total darkness is fine when I'm fine, when I'm having an "attack" I feel rooted to the spot and it's a MAJOR mental effort to move at all. last time I got out of hospital m daughter and I had a giant laughing fit when I shut my eyes and attempted to walk - I just couldn't do it and she thought it was hilarious. I think my laughter was fear based though...
I just had to google ballismus! It's only happened a couple of times so I couldn't really tell you and feel inadequate describing how my arm behaves. Sort of a violent back-and-forth motion, almost like waving?
Anyway, feeling vile today after a 'good' day yesterday when I ran around doing too much, promptly to get knocked for six last night. this *****.
I think I have some underlying bug or something as well, as my appetite is almost zero, I've had diarrhoea in bursts (eeew, sorry, pardon pun) for weeks, and lost stacks of weight as a result. I think I need that tested now too....
the lightheadedness causes me fatigue too. but THE FATIGUE, this demyelinating disease(MS) fatigue is like someone gave me a shot of novicaine in the head. i can barely keep my head up and just want to lay down.
you know the real kicker about this issue for me, i can't fall alseep when i lay down when this happens!!
i don't understand that at all. LOL
>>total rethink and re-assessment.
by all means do so. there are good bio-mechanics and bad bio-mechanics. too bad we can't list thme on Angie's List to save others the money and trouble.
[i can barely keep my head up and just want to lay down. you know the real kicker about this issue for me, i can't fall alseep when i lay down when this happens!! i don't understand that at all. LOL ]
I've only been able to work out that i feel less fatigued if i dont have to deal with gravity, add gravity to the equation and because of what i'm assuming is autonomatic dysfunction my brain is shutting down all it thinks are unessasary functions, trying to conserve energy.
Jemma I totally understand your comment of "when I'm having an "attack" I feel rooted to the spot and it's a MAJOR mental effort to move at all" by any chance do you fall over a bit because of the frozen limbs? Anyway I hope thinks get better for you soon.
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