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Old 10-11-2012, 02:48 AM   #1
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new without dx

hi
this is quite lengthy,my symptoms started about 8 yrs ago,i remember pain in 1 eyewith movement as well as weakness in legs,tremor in hand,and bladder control problems,etc.a yr later dx with fibromyalgia,,through the yrs had loss of vision 1 eye,graying of vision,had mri in 2005 and 2008 nothing showed,blamed fibro..i also have ibs...last nov had bad dizzy spell,couldnt move without everything spinning,muscle spasm.then in march started new attack that lasted 3 months..no control of bladder at all,spasms,weakness in legs,ibs and terrible facial pain in temples and face..insisted on seeing neuro again,even though my dr didnt want me to,he said he didnt know what was wrong,but probably not fibro causing smp,but doubts ms,he did say slight weakness on left side.and hyper reflex which i always had.now my left arm and 2 fingers feel weak,,,anyway i know there is more symptoms just cant think right now. am going saturday for anothe mri.hope something shows,i know i sound crazy...any feedback or thoughts about all this ,,appreciate it
oh and have had what i can only discribe as attacks thru the years,sometimes a yr or yr and 1/2 apart..just feel i need to know what is going on..neuro said i might just be one of those people who never know whats wrong with them,,can't accept that...i need dr.house..lol

 
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Old 10-11-2012, 04:07 AM   #2
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Re: new without dx

Hi. Welcome to healthboards. I understand that medical care in Canada is quite different from in the States, and you have limited choices in where you go or who you see; but my suggestion is to make sure you are seeing a doctor who specializes in MS. And, if you arent - see if you can get a referral to one who is after this appointment.

Your MRI, (you werent specific) needs to be of the brain and CSpine- with and without contrast- this is where if you have MS lesions - they most likely will show up. If you are only imaging the brain, its highly likely that you will have lesions in your spine, which you will never know about. SO- if the MRI is only for the brain, ask if you can have one done also on the Cervical spine in the near future. Contrast is used for MS imaging, because lesions which are too small, will glow under contrast - thus giving a better overall picture.

Your symptoms do sound neurologic in nature- they also sound slightly like Lyme disease...has this been ruled out? ITs blood work, but a standard blood test isnt good enough- you might want to read more on Lyme on the Lyme boards here and see if you can get some info on the disease. I live with someone who suffers from Lyme, and you have similar presentation of symptoms.

As for MS; it could be....you said the last MRI was 4 years ago? This might be very telling....MRIs change from week to week sometimes- what wasnt there last time, may be there now.

Please keep us posted- and no, you arent crazy. You know your body- and you know something is wrong. As for the comment that the doctor made- also not very accurate. There are people with "mystery" diseases which are never figured out, this is true- but has this doctor actually ran all the tests to rule out things which have answers? MS presents like more than 400 other diseases- most of which can be ruled out by testing for them.

Try to see a MS specailist- not a regular Neuro, and certainly not a regular family doctor- go to someone who knows what tests to run, and what to look for before you accept that you might never get answers. Truthfully, I dont believe that- its a matter of getting to the right doctor who is willing to work with you to find them. Maybe you can pay privately? Come to the States for further testing? These are just options.

I hope you feel better soon.
Nikki
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Old 10-11-2012, 11:10 AM   #3
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Re: new without dx

Welcome.

You have certainly been carrying a burden for quite some time.

As Nikki mentioned already, I would reiterate, that if MS is a likely cause, you have to see an MS Specialist. I realize that this is not so easy to do within the Canadian health system, but fear not, you are not alone. There are other Canadian MSers here who can lend you advice.

I would start with a referral from your existing doctor.

Have you been to the other boards herein this website? There are fibro boards and boards to cover other problems too. There is also a Lyme board. While you are welcome here, I would also encourage you to read those boards too and see if you find a good if not better match. I really want to help you get the right answers. If MS is the direction to go, then we shall give you the morale support you need. You are not alone.
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Old 10-11-2012, 10:40 PM   #4
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Re: new without dx

thanks for answering.I do go on the fibro board alot,alot of symtoms r related to fibro,but alot arent't.and I will check out the lyme board.
will have mri on saturday,I will get my copy of mri and reports and then I will ask for a referral to see ms dr.need to rule it out,and hopefully they will help to find some answers here..I am presently working nite shift,12 hours and it is horrible.thinking i will have to give this up soon.I know I get what they call the ms hug,it is so painful,it starts at a point in my back and goes around chest and feels like i am being squeezed,i have gotten that for yrs,not frequent,maybe a few times a yr,don't want it more than that,ouch..is it possible to have that type of pain,and have something else other than ms...does that present itself in other conditions as well...
thanks again for your support

 
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Old 10-11-2012, 11:07 PM   #5
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Re: new without dx

Yes, I would say you are experiencing many MS symptoms replete with the ever "popular" MS Hug. You can very well have both fibro and MS. Lyme tests often have a false positive; therefore, a second test may be needed. Hopefully your MRI will get you some needed answers.

For me, I had to give up work, but there are others who can continue a career with lateral shifts/transfers or workplace accommodations. I hope you can find something that works for you. I do not know the disability procedures or workplace accommodation rules in Canada. I certainly hope you get answers and RELIEF soon!!
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Old 10-12-2012, 03:12 AM   #6
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Re: new without dx

my mri is only of the brain,without contrast,ah i know...

 
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Old 10-12-2012, 05:36 AM   #7
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Re: new without dx

No worries. you can still work with what you have. In Oct 1982 my neuro had an opening in the new MRi room and asked me to give it a try. before that, doctors made MS diagnoses without an MRi. The MRI is but one of the tools the neuro has. Stay strong!
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