Hello All,
So, I finally have an MRI scheduled for June 10th 2011, which was only ordered because I had 3 separate incidences of unilateral pupil dilation ranging from 10 minutes to an hour each time - no pain, no weakness, no paralysis - in fact no other symptoms other than my everyday symptoms & these were not worsened during the events (see list below).
The only other factor is that at least 2 of these incidents occurred during menstruation that I know of - I do suffer from migraines (since I was 15, started menstruating at age 11) but these dilated pupil events seem to be at ovulation or just before I start my period (typically 3-4 days before).
I have suspected I may have MS since I was 23 (I am now nearly 35) but as I was already diagnosed with unequal leg length & scoliosis (sideways) at age 16 I hoped that most of my pain was related to this condition. I also had a major car crash in Feb 1999 in which I was unconscious for minimum 15 minutes but NO x-rays/CT/MRI were taken at that time (this still amazes me!).
However by July 2009 the daily grind of the below listed symptoms took their toll - I went to a doctor asking him to order full spine & head x-rays - thinking it would reveal some kind of untreated whiplash trauma or potentially even spina bifida (as I have 2 dimples just above my buttocks). They did not do either but my x-rays did confirm:
- the unequal leg length (right leg shorter)
- that I have scoliosis forward as well as sideways, that my head is slightly tilted to the right and that I basically have slightly compressed nerves in my neck, middle & lower back
- I also have severe osteoarthritis of the neck & spine which is in the latter stages of the disease - the x-rays were a mess of bone spurs left, right & centre.
In short - based soley on the info below (a potted medical history & list of symptoms) - how many of you, as sufferers, would lay a bet on me having MS or whether all my pain/symptoms are from my crooked back, pinched nerves & osteoarthritis? Or any other ideas to throw out there? I did have recent blood tests (Jan) which showed I do not have lupus or lyme's disease for instance, though they did show I was slightly anaemic (but only slightly). I took iron tablets for about 6 weeks but other than some relief from dizzy moments during or shortly after my period there has been no improvement of my symptoms.
Age 7 - had about half an hour one day where I saw funny 'sparkles' in front of my eyes, like a tv on static almost. Mum took me to the specialist opthalmological hospital - nothing untoward, except slight squint for which I was given exercises for. Never did do those exercises!!
Age 12 - was standing on a bench at school & fell off, not particularly hard but fell flat on my back onto gravel. I experienced temporary paralysis from waist down for about 5 minutes. I think the teachers thought I was acting up as no ambulance was called, particularly as I seemed to make a remarkable recovery.
Age 16 - felt ok in the morning but by end of school day felt like I had a tight band around my chest & when I got home I felt the need to lie down on a hard surface. Initally the band would feel so tight it would be excruciating to even breathe but eventually it would ease after about 45 minutes lying down & deep breathing, this went on for about 2 months. After some reading up in medical dictionaries I basically self-diagnosed myself as having unequal leg length & pain resulting from scoliosis. Huonded my mother to take me to the doctor - this was then confirmed. I was given a heel raise to put inside my right shoe, but told to remove it when my 3rd & 4th toes on my right foot started lifting off the ground. They still don't touch the ground properly. However the 'tight band/being squeezed' sensation/pain went away just as suddenly as it had come & before any treatment received for my scoliosis - one day it just stopped.
Age 21 - admitted to hospital with 'suspected meningitis'. I started the day with a migraine, or so I thought but by 10am pain was so severe & light so blinding I stumbled to my local doctor. I was willing to wait until the end of the day but when the Receptionist looked so concerned & said was I sure I could wait that long & there was an appointment available in an hour I took it. Well, by this time I was suspecting meningitis myself so was glad of any time saved on getting a diagnosis. By the time I got in to see the doctor my eyes were streaming & no matter how tightly I screwed my eyes shut the blinding light was unbearable, my blood pressure was through the roof (normally I have low to normal blood pressure). I was so disorientated throughout the whole thing I can't really remember much of my overnight stay, could also have been the medication they gave me as I also have a complete black-out of 4 hours of time, no memory whatsoever! Discharged myself 24 hours later - told by the doctor they didn't really know what it was but that it was proably just a severe migraine or 'possibly' viral flu. I had no other symptoms of flu at the time. I have not had a migraine like it since - my bad migraines usually involve neuralgia/numbness on the right hand side of my face, droopy right eye-lid, if left untreated will eventually progress to vomiting.
Age 21-34 (intermittently but getting progressively worse):
- severe neck/shoulder pain, really painful to put chin on chest - feels really tight across the shoulder blades
- what I call my 'wiggly worm' - this is a buzzing sensation in an area of skin on my right shoulder blade, although this can also just be pretty much permanent too. I just had nearly a year without it ( after seeing an osteo last March) but since last week it's back again - it had been gone so long I'd nearly forgotten about it, but it's what made me so miserable last time & what first pushed me into a doctor's office 2 years ago.
- numbness / tingling / pins & needles in toes, feet, calves, buttocks, cramps in toes (both feet) and 4th & 5th finger of right hand
- feel like my right foot is dragging, frequently seem to trip over my big toe
- some visual disturbances; blurriness, twitching image or feel my eyes have flicked upwards suddenly, greying out in centre of field of vision
- loss of balance & vertigo
- dizziness
- developed somewhere along the line a tendency to drool on occasion on right hand side of mouth
- oh so many migraines, without aura, one sided (right hand side), if left untreated will progress to nausea & vomiting. Speed is of the essence - the quicker I can get a tablet down my throat the sooner I will recover and the less debilitating my symptoms will be
- lost count of how many sinusitis infections I have had since I was about 15, I am allergic to penicillin so try to save using antibiotics for when I really really need to.
- tinnitus off an on...
- 3 single instances of urinary incontinence with no obvious cause
- occasional urinary hesitation
Recent developments; Jan 2011-present:
All of the above plus:
- now 4 instances of my left pupil being dilated whilst the right was not (see top of my posting)
- increased instances of numbness/tingling of toes, feet, now all fingers not just 4th & 5th fingers on right hand
- random burning sensations / electrical shock sensations / cold splashes sensations in arms, thighs, calves
- parts of the body feel much colder but on touch are not seeming any cooler or hotter than other parts of the body
- most bizarre 'waves' of mild pressure radiating upwards from toes to mid-calf & back down again, almost as if repeatedly putting socks on & taking them off again at exactly the same time on both legs. Causes numbness at the time.
- urinary hesitation/urinary urgency
Phew!
So what are your verdicts? Do you concur with me that there is a high likelihood it could be MS?
Thanks for your feedback,
Joanna
It is a frustrating road to be on...the road to a diagnosis. Some have been on that road for years and others seem to get an answer sooner.
The tests need to be done so they can rule out all kinds of stuff like Lisa said. Some of your symptoms sound familiar to me and others are unfamiliar.
As we both seek answers, I hope that each day for you has good stuff in it too. Everyone here is really helpful and open about their journey.
I welcome you too Joanna!
Laural