hello from Regina, Saskatchewan

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twistymirrors
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hello from Regina, Saskatchewan

Post by twistymirrors »

My name is Sandra and would first like to say that I have not yet been diagnosed. I am 27 and as mentioned I live in Saskatchewan Canada. I've read that MS affects more people per capita in Saskatchewan than anywhere else in Canada.
Here is what I have been experiencing since March(after I stopped taking progesterone). I've always had headaches so my first main symptom was vertigo. I was always dizzy, still am always dizzy, with the vertigo is the nausea. Other symptoms I started having were loss of memory, balance, speech problems, fatigue. My speech was so bad that I was slurring, stumbling and forgetting words. The neurologists answer for that was "whose to say that it isn`t normal?". After looking into my eyes he decided to send me for a spinal tap thinking maybe I had intracranial hypertension. My pressure came back 17...it wasnt the problem. He didn't bother testing my spinal fluid for other diseases(ie-lupus, lymes) and said he didnt think there was anything neurologically wrong with me, gave me a perscription for my headaches and sent me on my way. I was persistent because I know there is something neurologically wrong with me, so i kept going back. I should also say now that my MRI showed a small 4mm meningioma, and empty sella so he sent me to a neurosurgeon to see if surgery was needed. spent 10 minutes in the dr's office to find out neither the meningioma or empty sella could cause my symptoms and there was nothing he could do.
So back it was to the neuro. He finally admitted that my symptoms were neurological and is sending me to Regina's only MS specialist.
Since this last appointment I have heard nothing about the other specialist. I am starting to lose my sight, I have numbness in my hands and feet, and an all over tense feeling in my muscles.
My family Doctor(who has been great by the way) at the beginning of all of this also sent in a request for me to see an ENT. took 6 months to get into him but finally saw him a couple of weeks ago. He also believes its neurological and it could possibly for ms. But I don't have any of the typical lesions.
I have a few white matter hyperintensities but from what i've read thats more of a thing found in elderly people 60 and older who have had strokes or have dementia(another thing we are worried about because it runs in the family and is rarely diagnosed in people in their 20's).
I'm getting very frustrated! It took a long time to actually convince my parents that I was indeed sick...about 4 months. When I see my siblings they roll their eyes at me thinking im faking it, and i was cut off from short term disability at work because I dont have a diagnosis yet. Right now Im on Canada EI sick benefits till February 1st and then I have to go back to work part time. I'm scared to go back to work because they haven't really been very supportive of me being sick before I went on disability to the point I was told I would be fired if i missed anymore time in 2009. Now it's a new year but I feel I have very little chances left with them. When I told my manager theres a possibility that I have MS her response was "I thought it was really easy to get a diagnosis for ms, a girl here just recently was diagnosed". That really upset me, because again there is no belief in it.
But anyway thats my journey so far. The ENT has me scheduled for another MRI within 3 months...so I cross my fingers.
Thanks for listening.
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ndwannabe
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Post by ndwannabe »

Hello Sandra and welcome to the forums from another newbie :)

I just joined a few days ago - this board seems to have tons of usefull information.

I know how frustrating waiting for the diagnosis can get - it took me about 6 months to get concrete results from when I suddenly stopped being able to walk normally.

All of the other tests came in as perfect and normal and healthy, until I had me some 5 MRI's with dyes and without and finally spinal tap testing fot the inflammation.

I wish you get your results quick!
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DM
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Post by DM »

If possible, why not visit a Neuro in Toronto or Ottawa and get some more definitive answers.
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twistymirrors
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Post by twistymirrors »

right now i am too far away from toronto or ottawa...cant afford to travel...but I am moving to Brockville...so will be able to get better care in either toronto or ottawa. My moms friend in Ontario said there is a really good neuro clinic in Toronto that would be a good place to go. Until then I guess I wait :) still got 5 months left in Saskatchewan. My family Dr doesnt think I will get a diagnosis here because I've been to all of Saskatchewan's best specialists and she said they arent as good as some that I could see in Toronto.
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DM
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Post by DM »

The Ottawa General has some fantastic neuros and it is 50 minutes away. Same day trip. Beats driving all the way to Toronto.
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twistymirrors
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Post by twistymirrors »

thanks for the idea ;p...I'm originally from the ottawa valley...but dont know anyone else who has seen a neuro in ottawa other than my uncle(who was just diagnosed with frontal lobe dementia this spring)
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DM
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Post by DM »

When I first developed symptoms, after 5 days, went to the General, emergency, and after a series of usual tests, the fill in neuro found that I had some spots on my brain, possibly and old stroke. The main neuro, Dr Hogan, was at the Civic attending a patient there, and only if i was to wait another 3 hours over and above the 8 hours already there, he very much wanted to see me. I refused to stay any longer and was booked the following day as an out patient, and saw him a few weeks later. Excellent neuro, was satisfied with his prognosis, and he then referred to me to the MS specialist. I have no quams recommending anyone to go see him at the General.
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twistymirrors
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Post by twistymirrors »

does he accept patient referrals???
cuz I can get my GP to refer me before I move...so that I dont have to wait till i get a new gp and wait longer...
and there is always a chance that i could get a crappy gp who doesnt listen.
thanks for the info again :) I cant wait to visit ottawa again I havent been back in over 8 years(and i grew up in the ottawa valley) my dads family is all in Chalk River and Deep River and then my moms family is all in ottawa and brockville...soo it will be nice to be close to them again :)
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jimmylegs
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Post by jimmylegs »

love ottawa - more than i thought i would before i spent the summer there in '07! welcome TM :) good luck getting your dx as soon as possible.
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tgc
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In Moose Jaw and trying to get this all figured out...

Post by tgc »

Hi there!
I started having symptoms in July 2009, extreme fatigue, numbness in both feet and hands, somtimes my legs and arms as well. Also having very severe headaches and always nausea. Also having problems with my bowels and bladder. Also, having crushing chest/upper back pain... which was probably the most scary for me! I have been to see my GP who told me it was "just stress" but said that she would send me to a neuro for my benefit and for a CT just to rule out a brain tumor. She is not helpful at all. Anyways went to the neuro in Regina (Dr. Shauush?) and he told me that there was no explination, that it just must be stress, that I had no signs that there was anything neurologically wrong with me (and in my head, I was like... yah... sometimes I have symptoms non-stop for three weeks, and other times I am fine... I happened to see him one of the times I was asymptomatic). I am so freaking frustrated. Anyways, who did you see in Regina? I am just getting so tired of people telling me that it's all in my head.
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foreignlesion
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Post by foreignlesion »

TGC,

I went to several GP's over the course of about four years, and I was told every time that I had chronic stress. Dr. Bibi at the Broad Street Clinic, who is now my GP, was the first one to take my concerns seriously. She did blood work and Urine Analysis to exclude anything and everything. Although Chronic Stress can mimic MS, knowing something is wrong with your body and not being evaluated properly is extremely frustrating and stressful.

Dr. Bibi went over all my test results with me, and was very accomodating about giving me copies of everything. Everything came back normal, and she referred me to a Neurologist. When she was going to refer me to Dr. Shawush, I asked her to refer me to someone else, as I know a few people in the health care system, and I was pre-warned about Shawush. I recieved a clinical diagnosis very quickly by Dr. Rehman, and had an MRI to confirm within about 3 weeks.

I found Dr. Rehman very thourough in his examination and very helpful getting a diagnosis, but since then, I have found him to be of little use. I now recieve the majority of MS care from Dr. Katherine Knox at the MS clinic in Saskatoon.

A few words of advice for attaining a diagnosis:

- Don't tell anyone what you think you have. It may not be MS as there are many possibilities, from vitamin deficiencies and diabetes to spinal stenosis and nerve entrapment. Just let them know that you're worried about what's going on and you need to get it figured out.

- Keep detailed records of your symptoms, when they started and how long they lasted. It's easy to forget some details when meeting with doctors.

- Get copies of all your test results and create your own medical file. It will give you a better idea of what they've tested for and it may be helpful at future doctor visits.
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tgc
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Post by tgc »

Thanks so much Foreignlesion,
I appreciate the quick reply! Did you have to be refered to Dr. Rehman by your GP? I really would like to see someone else (not Dr. Shawush again!), but my GP is not great and I fear that she wouldn't be in a hurry to send me to another neuro, when Dr. Shawush basically agreed with her diagnosis. Also, I am thinking about switching GP's, but I don't want to loose any progress that I've made (however little it may be) in figuring out whats going on. Any suggestions?
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foreignlesion
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Post by foreignlesion »

I would suggest going to a walk-in. Try Dr. Bibi if you'd like.......she was very thourough. DO NOT tell whoever you go to who you've been to or what they've said. They may ask, but try to be vague, just tell them they haven't been able to give you a diagnosis. I went to 3 GP's within 3 days in order to find someone who would get things done. You may have to repeat some tests that you've already had done, but they may test for something that your GP didn't. Rehman was actually the first Ddr. to even test my reflexes, which were completely off. Seems like an easy way to figure out that somethings wrong that was ignored by about 8 GP's.
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twistymirrors
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Post by twistymirrors »

tgc:

I didn't have any luck with Dr Rehman, he passed me off tro Dr Shawush who like foreignlesion I do not want to see, he has a very poor rating on ratemds...so I asked my family dr to send me to someone in saskatoon.
My family Dr has been very helpful with trying to get me a diagnosis, and so is the ENT dr o'grady(he's the one who thinks its ms).
Dr O'Grady sent me for another mri(which i had yesterday) and a hearing test which i had thursday. The hearing test showed that the nerve behind my right ear was not responding to any of the sounds they put in there, so another sign.
I saw my family dr in the hospital yesterday because i was admitted under a different problem and she said I'm a very hard patient because they have a hard time finding out what was wrong with me(when i was at the hospital i guess i had some infection but they didnt know the source oif the infection-spent two days there getting strong antibiotics an d was sent home yesterday with a perscription)
I'm very hopeful with what the ent is doing...keep looking and dont give up. Don't let them tell you its all in your head. and if one dr wont work for you keep looking for one that will do their job.
and good luck :)
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