Personal diary – MS Spasms abruptly disturb a quiet night’s sleep

hi, it has been a while.. and this is an unusual post from me… but… Im scared.. :/

I had a very strange and painful incident this Sunday. My whole body was spasming/twitching in the middle of the night (at about 3am). It lasted a good 20-30mins:( After I took some paracetamol and drank a bit it went away. The strange thing is that it was just like the flu like symptoms I had after my first interferon/avonex injection (as expected, being a side effect), but I haven’t had it since then..and that was ages ago (2005!)

And so yesterday my whole body was aching and even before I went to bed I could feel it in my arms and legs. Not the spasming, but more like pain in the muscles/joints. And every time when I got up to pee last night I had such difficulties walking because my right foot went completely numb! :(

I stayed at home today, couldn’t go to work :( Luckily I have a Tysabri appointment later this afternoon so I will talk to a doctor, see what he/she can tell me.

So what does my mind start wondering about..? I am thinking of it nearby? Is it time? Just thoughts going through my mind..stupid thoughts. Will my boyfriend stay with me despite my potential disabilities? Although he really truly does love me, and I know that, can’t help but worrying on his behalf if he ends up with a challenged girlfriend…even though I know he knew from the beginning what MS could bring… silly huh? maybe you’ve had the same thoughts going through your head.. I just always think of the OTHER person, and how do OTHERS feel and how would this/that make THEM feel – it seems I always put others first rather than me, and my feelings and needs. I might need to work on that… but maybe it is just the way I am and I wont be able to do anything about it..

Just so you know, I have been on Tysabri since January 2009 (after Avonex failed on me following 4 years of weekly injections *chills*) and I have been very happy with it. I also have been confirmed, and re-confirmed that I (unfortunately) also carry the JC Virus.

Anyways, I am worried but I hope it is just a bad relapse… You are more than welcome to share your experiences with me, I’d be happy to hear from you!

Thanks! and stay positive;)


MS presents itself with various symptoms…

a bit more about the various MS symtpoms…

  • MS may present in various forms. Some patients have a predominance of cognitive changes, while others present with prominent ataxia, hemiparesis or paraparesis, depression, or visual symptoms. Bipolar disorder and frank dementia may appear late in the disease course, but sometimes are found at the time of initial diagnosis. Symptoms can be exacerbated by intercurrent illness, including viral or bacterial upper respiratory or urinary tract infections. Trauma has no impact on disease exacerbation. The impact of emotional stress on exacerbations is probably minimal and remains controversial.
  • Optic neuritis presents clinically as orbital pain, at rest or during eye movement, and loss of vision. Patients may complain of “patchy loss of vision,” and upon examination, a cecocentral scotoma and an afferent pupillary defect may be found. Patients may experience color desaturation even with normal visual acuity, usually manifested as the perception of red color as different shades of orange or gray.
  • Patients with MS may present with facial palsies or trigeminal neuralgia. In fact, the presence of bilateral facial weakness or trigeminal neuralgia strongly suggests the diagnosis of MS. Facial myokymia also may be a presenting symptom. Nystagmus (direction-changing) and internuclear ophthalmoplegia signs are other manifestations.
  • Painful limb syndromes are important to recognize. Commonly, patients complain of numbness or tingling in one or more limbs, variable weakness, or sensory level-related symptoms. Some have difficulty describing weakness or numbness, as these symptoms are obscured by incapacitating fatigue.
  • Episodes of central (as opposed to peripheral) vertigo are not uncommon. The nystagmus accompanying central vertigo has a rapid onset, does not fatigue easily, and changes with direction of gaze. CNS vertigo usually is accompanied by other complaints that can be directly attributed to brainstem or cerebellar pathway involvement (eg, diplopia, dysarthria).
  • An often overlooked manifestation of MS is the pseudobulbar affect, whereby patients have difficulty controlling their emotions (laughing, crying) and are perceived to act inappropriately by coworkers or friends.
    • Behavioral/cognitive symptoms also may include social disinhibition, dementia, or depression.
    • A greater tendency for attempting and committing suicide in MS is not related exclusively to a reactive depression, since this tendency is higher than that of patients with other devastating neurological disorders such as chronic inflammatory demyelinating polyradiculopathy (CIDP).
    • The neurologist should be aware that patients with conversion reactions and inappropriate affect, such as “la belle indifference,” may on occasion have an underlying organic illness such as MS.
  • Urinary retention and incontinence are common. Bowel habit changes may occur, but bowel incontinence is less frequent.
  • Sexual dysfunction affects the great majority of patients with MS and includes symptoms such as lack of desire, erectile dysfunction, impaired sexual responsiveness, premature ejaculation, impaired genital sensation, or inability to physically interact with the partner due to painful leg adductor muscle spasms.