Aa
traveling to florida in october for a holiday from aberdeen scotland
hi guys im 31 live in aberdeen scotland im travellling to florida walt disney for a holiday in october i have had a lot of problems with my health . my symptoms started in my teens where i developed speech walking headache eye problems was addmitted to hospital they said migraine no mri or scans just sent home a few days later when i got better also i experienced another eposiode where my left arm went useless with pins in needles . then fatique with musle pain brain fog tingle arm and feet . numbness in hands and feet . spasms in arms hands which curl in while sleeping . i have had good times where i feel much better but my symptoms allways come back last year was bedded up for 2 months with severe fatique brain fog dizziness weakness and numbness in hands feet and stiffness headaches . then i gtan mri last year where i had 2 lesions on frontal lobe then a second one 6 months later a 3rd one appeared . i got an lp done that came back clear . the dr said it was normal and couldnt see a pattern for ms on my scans although i had these lesion >? what the hell are they then . now its jan 2011 and im experiencing all the symptoms i had before and i have tremor to its lasted since last weekend i thought it was going away again last night but when i got up today i still feel the same . im logging my symptoms more often now on patients like me website and it looks like im getting one to episodes a year . i reallly dont know where to go with my health problems now as i feel the nhs isnt taking my symptoms seriously . sometimes i feel great then it comes back and i just cant function the same i feel that i dont want to go out the same as my thoughts and brain dont function the same . i do make an efort to get up and tidy the house a bit but then i go back and sit in bed and usally go on the internet to see if i can get to the bottom of my health problems . im going to florida in october and was thinkig on going to the mayo clinc in jackson ville . how much does it cost ? and are the medical proffesionals anygood there ? is there an ms specialist there ? how long does it take to get tests done their ? wuould it be worth my while ? also i know my neurologist said i do not have ob bands from lumbar puncture . does everyone with ms have these bands ? can they show sometimes and not other times ? also because im 31 do you think sometimes this may be too young to diagnose ms or would they know >? im sorry this is a very long story but im really at the end of my tether with this condtion . thanks you for reading x jo
One more thing, Jo:
Make sure you have copies of all your tests & lab results, including a copy of any MRIs (not just the report -- get a CD with the images), LP, bloodwork, etc. And a timeline of all your symptoms.
That will expedite things and maybe reduce the duplication of testing -- wherever you go for answers.
Again, I DID have a good experience with Dr Shuster at Mayo -- but I really do think it all depends on the actual doctor you see, more than the institution.
My diagnosis came at an Orlando ER, based on MRIs & sensory loss on one side. I was 59 yrs old, never had previous symptoms. The diagnosing neuro was the on-call neuro at the ER, who wanted to do an LP after the MRIs were done -- when I asked whether the results of that LP would change his diagnosis, he said "no" : LPs have a very very high false-negative rate, and are really more used to confirm an MS diagnosis rather than to rule out MS.
So, as you can see, with the right doctor, you CAN get a diagnosis pretty quickly.
In your case, US healthcare costs might be the bigger problem.
Make sure you have copies of all your tests & lab results, including a copy of any MRIs (not just the report -- get a CD with the images), LP, bloodwork, etc. And a timeline of all your symptoms.
That will expedite things and maybe reduce the duplication of testing -- wherever you go for answers.
Again, I DID have a good experience with Dr Shuster at Mayo -- but I really do think it all depends on the actual doctor you see, more than the institution.
My diagnosis came at an Orlando ER, based on MRIs & sensory loss on one side. I was 59 yrs old, never had previous symptoms. The diagnosing neuro was the on-call neuro at the ER, who wanted to do an LP after the MRIs were done -- when I asked whether the results of that LP would change his diagnosis, he said "no" : LPs have a very very high false-negative rate, and are really more used to confirm an MS diagnosis rather than to rule out MS.
So, as you can see, with the right doctor, you CAN get a diagnosis pretty quickly.
In your case, US healthcare costs might be the bigger problem.
Hi Jo and welcome.
A favor please - when you post would you kindly break up the words into smaller paragraphs ? Many here have vision problems and reading this lnegthy paragraph just turns into a blur.
To answer a few of your questions-
31 is the perfect age to be diagnosed with MS - you are in that recognized age range. It's when we are younger than 20 or older than 40 that the doctors want to discard the idea of MS because of the age.
Florida in October is a lovely time to go - the children are back in school and the vacation places (Disney, Universal, etc) aren't very busy. That means shorter lines. Prices are also less until the winter months hit.
As for Mayo Clinic - we have a saying here that might not translate to the UK - but we say "hold the Mayo" because we are not impressed with their work with MS. They are very good for other things but have their own way of thinking about MS diagnosis. If you can't get one there on the NHS you most probably won't get one at Mayo, either.
Whatever you do, don't tell your doctors you are on the internet trying to figure this out - they will immediately discard anything you say as being most likely fabricated.
There are many diseases that cause lesions on the brain besides MS. Have your doctors suggested any other explanation?
Keep tracking your symptoms - one day that will be very useful in tyring to show a pattern for your symptoms. How does your neurological exam look? Do you have any hyperreflexes, vision irregularities or muscle problems when you are examined? That also fits into the big puzzle.
good luck with this - I hope you can find some answers and I hope we will see you around here some more.
be well, Lulu
A favor please - when you post would you kindly break up the words into smaller paragraphs ? Many here have vision problems and reading this lnegthy paragraph just turns into a blur.
To answer a few of your questions-
31 is the perfect age to be diagnosed with MS - you are in that recognized age range. It's when we are younger than 20 or older than 40 that the doctors want to discard the idea of MS because of the age.
Florida in October is a lovely time to go - the children are back in school and the vacation places (Disney, Universal, etc) aren't very busy. That means shorter lines. Prices are also less until the winter months hit.
As for Mayo Clinic - we have a saying here that might not translate to the UK - but we say "hold the Mayo" because we are not impressed with their work with MS. They are very good for other things but have their own way of thinking about MS diagnosis. If you can't get one there on the NHS you most probably won't get one at Mayo, either.
Whatever you do, don't tell your doctors you are on the internet trying to figure this out - they will immediately discard anything you say as being most likely fabricated.
There are many diseases that cause lesions on the brain besides MS. Have your doctors suggested any other explanation?
Keep tracking your symptoms - one day that will be very useful in tyring to show a pattern for your symptoms. How does your neurological exam look? Do you have any hyperreflexes, vision irregularities or muscle problems when you are examined? That also fits into the big puzzle.
good luck with this - I hope you can find some answers and I hope we will see you around here some more.
be well, Lulu
Mayo in Jacksonville has an MS specialist, Dr Elizabeth Shuster. I saw her for a 2nd opinion & liked her very much. My Mayo experience was very positive, but others on this forum have not had similar experiences I think you have to get the right doctor -- so be sure you get her.
Not sure of cost -- you should contact Mayo for info (my insurance paid for the 2nd opinion, which lasted at least an hour & was billed at around $500). Since you're not from USA, you likely will have no insurance coverage, and all the tests -- MRI, labs, etc can be very expensive.
Mayo suggests you plan to stay at least one night in the Jacksonville area -- there are reasonably-priced hotels nearby, and most have Mayo discounts on the lodging. You should be prepared to stay a few days, if there are lots of tests to be done.
The Mayo appointments staff is very thorough in telling you all oyu need to know ablout the process. Once you have an appointment, they send you a big package full of info.
I live in Orlando -- have a great time at Disney!
Not sure of cost -- you should contact Mayo for info (my insurance paid for the 2nd opinion, which lasted at least an hour & was billed at around $500). Since you're not from USA, you likely will have no insurance coverage, and all the tests -- MRI, labs, etc can be very expensive.
Mayo suggests you plan to stay at least one night in the Jacksonville area -- there are reasonably-priced hotels nearby, and most have Mayo discounts on the lodging. You should be prepared to stay a few days, if there are lots of tests to be done.
The Mayo appointments staff is very thorough in telling you all oyu need to know ablout the process. Once you have an appointment, they send you a big package full of info.
I live in Orlando -- have a great time at Disney!
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