It's My Disease And I'll Cry If I Want To........ (And A Lot Of Times When I Don't)
As my 4th decade approaches I feel the need to speak about things that have bothered me in the past. Bothered me so much that I kept my thoughts inside while debating whether I should be telling someone (a professional someone) just to get the thoughts straight and out of my head somewhat. We I didn't and I haven't sooooooo.... time for a little blog ramble about things that disturb me about having MS.
1. I'm afraid. I'm afraid, Dave. Dave, my mind is going. I can feel it. I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it. I can feel it. I'm a... fraid. HAL (Douglas Rain) 2001: A Space Odyssey Ahh it sounds so easy when you read the literature...brushing casually over the words "cognitive deficits" like anyone can live without a few cognitive processes. OK so I am getting older, and not being able to articulate names of things (or people) is something you would expect of someone in their eighties but here I am still in my thirties talking like Homer Simpson "Marge, where's that... metal dealie... you use to... dig... food? ...". Unfortunately when you look basically normal, the fact that you can't remember the word for something can create the assumption that the cause is one of the following drugs, booze, drugs and booze, you are a moron.
I know I have lost quite a few IQ points in the last few years too. Probably about 20. Maybe more. Luckily I was a bright spark to start with. I remember reading after being diagnosed (oh deary me the internet has some horror stories from some people with MS) about this guy who was in the US army (or was a marine or some other ra-ra military job) who was diagnosed because his reports had deteriorated to the level of an 8 year old attempting to describe events. He then went on to talk about how MRIs had shown he had a hole right through his brain about the width of a pencil.
My ability to write beautiful prose has been damaged too and it is much harder than it was a few years ago to write a nicely rounded sentence, to sit back and admire the creation. Now it is a hard slog to get the words there in a decent structure, first go (as you can probably tell from the blog and my lack of self editing :)
2. I never thought I'd be so tired at 22. - Jules (Demi Moore) St Elmo's Fire When I was a teenager my father took to calling me lazy. Not only was I going to school, I was working a casual job and I was training 5-6 nights a week for Athletics or long distance running. Because I would prefer to rest rather than clean ovens or hand weed gardens he would scream at me and point out my other siblings were doing their bit yadda yadda yadda. I would look at them and wonder why they didn't feel so tired they could hardly speak. Fast forward a decade and the same thing was happening when it came to working and house cleaning, another decade and add 2 kids to the mix. I always thought I was lazy, there could be no other explanation, other people didn't get tired, other people could walk around in the city for hours and then come home and cook and clean, other people didn't need a nap at 3pm on summer afternoons.
The fatigue factor has always stuffed me around, I have felt guilty that my kids have seen me almost zombie like because I was so tired I couldn't focus on what they were saying. I know now that fatigue is the most wide spread symptom of MS. But I bet it is one of the least understood by non-MS people. Again, I look normal until I can't stand up any more. I've got my reputation as superwoman to uphold but dammit won't some fucker give me a hand with the housework*?
3. I was going to write about how I cry too easily now (see title then reference emotional lability) but couldn't be arsed after seeing this table that I have neatly stolen to put in what I have and have not experienced. There are more symptoms than are listed below too...like the fact at 24 my cat scan showed my brain had shrunk to the size of a 60 year old's.
Description
Optic Neuritis
Blurred vision, eye pain, loss of colour vision, blindness NO
Diplopia
Double Vision NO
Nystagmus
Jerky Eye Movements YES
Ocular Dysmetria
Constant under- or overshooting eye movements YES
Internuclear Ophthalmoplegia
Lack of coordination between the two eyes, nystagmus, diplopia YES
Movement and sound phosphenes
Flashing lights when moving eyes or in response to a sudden noise MAYBE
Afferent Pupillary Defect
Abnormal pupil responses NO
Motor Symptoms
Description
Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis
Muscle weakness - partial or mild paralysis YES
Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia
Paralysis - Total or near total loss of muscle strength YES
Spasticity
Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs YES
Dysarthria
Slurred speech and related speech problems YES
Muscle Atrophy - Wasting of muscles due to lack of use NO
Spasms, Cramps - Involuntary contraction of muscles YES
Hypotonia, Clonus Problems with posture NO
Myoclonus, Myokymia - Jerking and twitching muscles, Tics YES
Restless Leg Syndrome Involuntary Leg Movements, especially bothersome at night NO
Footdrop foot drags along floor during walking YES
Dysfunctional Reflexes MSRs, Babinski's, Hoffman's, Chaddock's YES
Sensory Symptoms
Description
Paraesthesia Partial numbness, tingling, buzzing and vibration sensations YES
Anaesthesia Complete numbness/loss of sensation YES
Neuralgia, Neuropathic and Neurogenic pain Pain without apparent cause, burning, itching and electrical shock sensations YES
L'Hermitte's Electric shocks and buzzing sensations when moving head YES
Proprioceptive Dysfunction Loss of awareness of location of body parts NO
Trigeminal Neuralgia Facial pain NO
Coordination and Balance Symptoms
Description
Ataxia Loss of coordination YES
Intention tremor Shaking when performing fine movements YES
Dysmetria Constant under- or overshooting limb movements YES
Vestibular Ataxia Abnormal balance function in the inner ear Hmmm NO
Vertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia NO
Speech Ataxia Problems coordinating speech, stuttering YES
Dystonia Slow limb position feedback err I don't know
Dysdiadochokinesia Loss of ability to produce rapidly alternating movements, for example to move to a rhythm NO
Bowel, Bladder and Sexual Symptoms
Description
Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence YES
Flaccid Bladder, Detrusor-Sphincter Dyssynergia Urinary hesitancy and retention YES
Erectile Dysfunction Male and female impotence PROBABLY
Anorgasmy Inability to achieve orgasm YES
Retrograde ejaculation Ejaculating into the bladder NO THANKS
Frigidity Inability to become sexually aroused YES
Constipation Infrequent or irregular bowel movements YES
Fecal Urgency Bowel urgency YES
Fecal Incontinence Bowel incontinence YES
Cognitive Symptoms
Symptom
Depression YES
Cognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall YES
Dementia NO
Mood swings, emotional lability, euphoria YES
Bipolar syndrome AHAHH I Dont KNOW
Anxiety YES
Aphasia, Dysphasia Impairments to speech comprehension and production YES
Other Symptoms
Symptom
Description
Fatigue YES
Uhthoff's Symptom Increase in severity of symptoms with heat YES
Gastroesophageal Reflux Acid reflux YES
Impaired sense of taste and smell YES
Epileptic seizures NO
Swallowing problems YES
Respiratory problems NO
Sleeping Disorders NO
Inappropriately cold body parts YES
* both my children and my partner do help with housework...the surface stuff anyway. I need a CLEANER
1. I'm afraid. I'm afraid, Dave. Dave, my mind is going. I can feel it. I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it. I can feel it. I'm a... fraid. HAL (Douglas Rain) 2001: A Space Odyssey Ahh it sounds so easy when you read the literature...brushing casually over the words "cognitive deficits" like anyone can live without a few cognitive processes. OK so I am getting older, and not being able to articulate names of things (or people) is something you would expect of someone in their eighties but here I am still in my thirties talking like Homer Simpson "Marge, where's that... metal dealie... you use to... dig... food? ...". Unfortunately when you look basically normal, the fact that you can't remember the word for something can create the assumption that the cause is one of the following drugs, booze, drugs and booze, you are a moron.
I know I have lost quite a few IQ points in the last few years too. Probably about 20. Maybe more. Luckily I was a bright spark to start with. I remember reading after being diagnosed (oh deary me the internet has some horror stories from some people with MS) about this guy who was in the US army (or was a marine or some other ra-ra military job) who was diagnosed because his reports had deteriorated to the level of an 8 year old attempting to describe events. He then went on to talk about how MRIs had shown he had a hole right through his brain about the width of a pencil.
My ability to write beautiful prose has been damaged too and it is much harder than it was a few years ago to write a nicely rounded sentence, to sit back and admire the creation. Now it is a hard slog to get the words there in a decent structure, first go (as you can probably tell from the blog and my lack of self editing :)
2. I never thought I'd be so tired at 22. - Jules (Demi Moore) St Elmo's Fire When I was a teenager my father took to calling me lazy. Not only was I going to school, I was working a casual job and I was training 5-6 nights a week for Athletics or long distance running. Because I would prefer to rest rather than clean ovens or hand weed gardens he would scream at me and point out my other siblings were doing their bit yadda yadda yadda. I would look at them and wonder why they didn't feel so tired they could hardly speak. Fast forward a decade and the same thing was happening when it came to working and house cleaning, another decade and add 2 kids to the mix. I always thought I was lazy, there could be no other explanation, other people didn't get tired, other people could walk around in the city for hours and then come home and cook and clean, other people didn't need a nap at 3pm on summer afternoons.
The fatigue factor has always stuffed me around, I have felt guilty that my kids have seen me almost zombie like because I was so tired I couldn't focus on what they were saying. I know now that fatigue is the most wide spread symptom of MS. But I bet it is one of the least understood by non-MS people. Again, I look normal until I can't stand up any more. I've got my reputation as superwoman to uphold but dammit won't some fucker give me a hand with the housework*?
3. I was going to write about how I cry too easily now (see title then reference emotional lability) but couldn't be arsed after seeing this table that I have neatly stolen to put in what I have and have not experienced. There are more symptoms than are listed below too...like the fact at 24 my cat scan showed my brain had shrunk to the size of a 60 year old's.
Description
Optic Neuritis
Blurred vision, eye pain, loss of colour vision, blindness NO
Diplopia
Double Vision NO
Nystagmus
Jerky Eye Movements YES
Ocular Dysmetria
Constant under- or overshooting eye movements YES
Internuclear Ophthalmoplegia
Lack of coordination between the two eyes, nystagmus, diplopia YES
Movement and sound phosphenes
Flashing lights when moving eyes or in response to a sudden noise MAYBE
Afferent Pupillary Defect
Abnormal pupil responses NO
Motor Symptoms
Description
Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis
Muscle weakness - partial or mild paralysis YES
Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia
Paralysis - Total or near total loss of muscle strength YES
Spasticity
Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs YES
Dysarthria
Slurred speech and related speech problems YES
Muscle Atrophy - Wasting of muscles due to lack of use NO
Spasms, Cramps - Involuntary contraction of muscles YES
Hypotonia, Clonus Problems with posture NO
Myoclonus, Myokymia - Jerking and twitching muscles, Tics YES
Restless Leg Syndrome Involuntary Leg Movements, especially bothersome at night NO
Footdrop foot drags along floor during walking YES
Dysfunctional Reflexes MSRs, Babinski's, Hoffman's, Chaddock's YES
Sensory Symptoms
Description
Paraesthesia Partial numbness, tingling, buzzing and vibration sensations YES
Anaesthesia Complete numbness/loss of sensation YES
Neuralgia, Neuropathic and Neurogenic pain Pain without apparent cause, burning, itching and electrical shock sensations YES
L'Hermitte's Electric shocks and buzzing sensations when moving head YES
Proprioceptive Dysfunction Loss of awareness of location of body parts NO
Trigeminal Neuralgia Facial pain NO
Coordination and Balance Symptoms
Description
Ataxia Loss of coordination YES
Intention tremor Shaking when performing fine movements YES
Dysmetria Constant under- or overshooting limb movements YES
Vestibular Ataxia Abnormal balance function in the inner ear Hmmm NO
Vertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia NO
Speech Ataxia Problems coordinating speech, stuttering YES
Dystonia Slow limb position feedback err I don't know
Dysdiadochokinesia Loss of ability to produce rapidly alternating movements, for example to move to a rhythm NO
Bowel, Bladder and Sexual Symptoms
Description
Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence YES
Flaccid Bladder, Detrusor-Sphincter Dyssynergia Urinary hesitancy and retention YES
Erectile Dysfunction Male and female impotence PROBABLY
Anorgasmy Inability to achieve orgasm YES
Retrograde ejaculation Ejaculating into the bladder NO THANKS
Frigidity Inability to become sexually aroused YES
Constipation Infrequent or irregular bowel movements YES
Fecal Urgency Bowel urgency YES
Fecal Incontinence Bowel incontinence YES
Cognitive Symptoms
Symptom
Depression YES
Cognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall YES
Dementia NO
Mood swings, emotional lability, euphoria YES
Bipolar syndrome AHAHH I Dont KNOW
Anxiety YES
Aphasia, Dysphasia Impairments to speech comprehension and production YES
Other Symptoms
Symptom
Description
Fatigue YES
Uhthoff's Symptom Increase in severity of symptoms with heat YES
Gastroesophageal Reflux Acid reflux YES
Impaired sense of taste and smell YES
Epileptic seizures NO
Swallowing problems YES
Respiratory problems NO
Sleeping Disorders NO
Inappropriately cold body parts YES
* both my children and my partner do help with housework...the surface stuff anyway. I need a CLEANER
posted by Allison Reynolds at 7:04 PM
5 Comments:
You need a cleaner and I may well need extra cleaning work soon...maybe.
As you may know, my mother has MS. Her symptoms are very similar to yours. Some you have that she doesn't and vice versa but the stereotypical ones like fatigue and strange neural feelings are naturally there.
What you may not know is that as early as the age 10...long before mum dreamed she had MS, the doctors thought I may have it. My teenage years saw some strange things happen. Like walking down the stairs at school and being overcome with vertigo that saw me unable to see straight and having to lean on the wall to the left in order to move. This happened 3 times and never again. I was once carrying a not very heavy pile of books to the book exchange 10 metres away from my car. I got a strange feeling that my legs were going to give way so I walked faster to make it in time. I didn't...they just turned to jelly and I went over and the books went everywhere. The same thing happened once more a month later and never again. I had feelings like a hairbrush was going up and down the inside of my skin on my legs. That happened a few times and never again. I often had my thumbs and big toes feel numb but like there was a hard ball in the centre. That happened for years but it went away when I got healthy. I've had a myriad of other weird things happen like the old hot skewer in the head feeling and other strange neural disturbances. I was monitored for heart palpitations and had an MRI and catscan but all showed up normal. I used to always be ill and have no energy. I also got the worst sinus headaches from the heat and migraines from looking up or down for too long. Now I'm fine. I get the odd strange feeling but only every few months or so. I guess I'm OK, which is great for me but I do have an inkling of how you must feel.
What I do know is actually not that abnormal is the cognitive trouble you have. You have perfectly described what I suffer from on a daily basis...but I'm only 32. As you say though, at least you were sharp to begin with. I feel the same but lament the loss of my steel trap memory. I used to brag about it. I could remember a phone number I've only heard once and had not used after 6 months. Mum moved recently. It took me 3 months to remember her new number even though I rang her every other day. The good news is that it's stress related, according to my psychologist. You may have read that already. I gather you are pretty stressed and I know stress is the greatest factor in the worsening of MS. Are you expecting too much of yourself? You work full time and have a family. You said yourself that you have to be superwoman. Surely it can't help (though I can't offer advice on how to stop feeling like you should be doing it all for if I knew, I'd practice it on myself).
Anyways...good luck. I know that's about all I can offer you. Some people are just unlucky in some way, I guess, but knowing that doesn't really make it any easier, does it?
Well done, what a fabulous post!
I don't know how far into my cesspool of thoughts and memories of my journey through the MS landmines of my blogs you have traversed, but somewhere in there is buried a bit about a researcher who came to interview me a couple of years ago about cognitive function in people with MS. I was #89 on her list, so by the time she got to my dining table with her laptop full of testing shit she had certainly met a few of us.
The one thing that stood out for her was the consistently high above average intelligence and articulation of those she had met in her travels whilst researching her doctorate papers. And that while we were complaining at how much our brains had lost along the way, to the outside observer we appeared quite normal in many ways when cognitive functionality was involved.
Maybe because Joe Public didn't know what we were capable of to start with.
MS is, for me, an outright assault on every level- emotional, physical, psychological, intellectual, sensory. You name it, some part of everything important has been stolen away with no hope of recovery. But still I battle the MonSter (cos I'm stupid like that and hate to give up).
And then we have to put up with other people's crap on top.
Onya girl, you done real, real good :-)
worry about you Newt. Not wanting to alarm you but I too had shown bits and pieces of symptoms along the way but was only diagnosed at age 34 (2000). After my daughter's birth in 1992 I been told in "multiple sclerosis advocate doctor" that I didn't have MS after presenting with half my face numb and the shrunken brain cat scan. Keep an eye out as pregnancy and birth can excacerbate stuff :)
And UberZip I am ashamed to say I haven't gone too far back into your blog yet ..err probably because I am too lazy *wink*. Despite my moaning above, I am in remission mostly and feeling the best I have felt in many years...many many years. Haven't mentioned in the blog but Christmas last year I was also diagnosed with Graves' disease (now there is a disease that sounds like a real fucking disease) and am on an anti thyroid medication. Now whether that is helping the MS or whether the Graves had been going for a long time I don't know, but shit I feel good now. The freaking out anxiety with hair falling out and total obsessive thinking has disappeared...ahh peace. And peace be with you, *hugs* you are AWESOME!
Oh, I see. Graves disease too.
Being a bit piggy, aren't we hmmm?
;-P
I had to look up graves disease. I used to wish for an overactive thyroid but I guess there's a lot more to it than some easy weight loss. The fatigue from both conditions would suck immensely.
I'm not sure whether I should be worried about myself or not. I do remember my first pregnancy bringing up some MS like symptoms but can no longer remember what they were...except the loss of memory. I can pinpoint that half my memory went during pregnancy but wasn't concerned as I'd read it was common but that the memory returns to normal post birth. Well, it just got worse with me.
It's funny how my memory plays tricks when I'm trying to spit something out vocally or I'm asked an on the spot question but the minute I put fingers to keyboard it all just flows perfectly. Do either of you find yourselves to be similar?
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