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Angry ,please read


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Old 02-28-2006, 06:36 AM   #1
duttin
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Angry ,please read

I'm not sure who I'm more angry with the MRI center or the handful of neurologist that I have seen.

I had the pleasure of going to the Cleveland Clinic 1 week ago.The neurologist I seen was wonderful, with a great sense of humor.She spent 2 1/2 hours with me.Very thorough testing and she explained each one and she told me what was passed and which test were failed.

When it came for her to reveiw the MRI films,I took her the actual films and a copy on a CD.The films in the packages were limited verses the ones on the CD.The MRI center selected and picked only a few to send to the neurologist to reveiw.As she was reveiwing these on the CD she found ones consistant with lesions in the cervical area.They are plain as day,little white ovals.Anyone picking up MRI films you need to specify that you need every picture,just not the ones the radiologist decides to print.

I had a lumbar puncture a month ago and I am yet waiting results for that,I really like this neurologist, but he has not yet released the results to the neurologist at the clinic,she had to threaten him through the legal department to get results.

I still don't have a comfirmed dx yet but she said by the end of March I would.I have to go back in 2 weeks for a deep muscle emg/ncs and a new set of MRI's and she will see me after the tests and give the results then.She is looking for polyneuropathy secondary to MS.

When I left her office I was very releived that she didn't dismiss my symptoms as being stress,anxiety or premenapausal.I've had Drs tell me that I was at that magical age (40) and thats when a body starts falling apart.

Anyone still seeking a DX's don't give up.Keep searching for a neurologist that will listen.I almost cancelled this appointment out of frustration.I've been on this roller coaster of neurological symptoms since 2004 and it has taken me to see the 9th to listen and actually hear me.

make a list of all your symptoms ,when they started,how long they lasted,did they return,if it is not a normal feeling for you write it down,big or small.this made my appointment go so much easier.When seeing a new DR,we don't always remember everything,leave the DR the list.Some appointments are time limited and this gives the neurologist time to reveiw it later.

When I left this DR she handed me a print out of 7 pages,she had on this her findings,future test and why.Blood test and what they were for.We all see these DRs and Lord knows what they are thinking or writing down and we are left a lot of times not knowing anymore than what we did before our appointment.

Just wanted to share.

Prayers to all

Toni

 
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Old 02-28-2006, 07:25 AM   #2
lilc
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Re: Angry ,please read

Toni, I'm so glad you are finally getting someone to pay attention and dig for the answers. It does seem almost criminal to me that so many doctors ignore and dismiss their patient's sx. The advice you've given is very good, I hope others can learn from the pain you've endured.
We're here for you, girl (I can call you "girl" - I'll be 49 in a month. I can tell you first-hand that MS sx and menopause sx are quite different!)

 
Old 02-28-2006, 08:13 AM   #3
Punkdizzle
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Re: Angry ,please read

nuffs3, just a quick question for you if you dont mind.. how did you get an appt. at the Cleveland Clinic. did you just call and make one or did you have to be referred? i am already Dx but want to get a sceond opinion and more info on my MRIs and tests anyway.. just for my own peace of mind.. my neuro is pretty well educated on MS but he is not a MS specialist.

 
Old 02-28-2006, 08:52 AM   #4
lestoby
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Re: Angry ,please read

I agree! Keep a daily pain journal. I am keeping one pretty religiously since the 1st of the year. I have not seen my GP or neurologist since then, but I did see my OD and he was very appreciative of the journal regarding my eye symptoms.

The good news is that I have been feeling pretty good for the past 2 weeks, that I have really not had to put anything into my daily journal except for my eye problems.

I keep the list on a spreadsheet with the categories of:

Date - Pain Level (scale of 1-10) - Body Part - and symptom.

I can then sort the list by body parts and hand the list to the appropriate doctor that I am going to see.

I think I am feeling better because I have 2 new dogs (my last beloved pets died within 3 months of each other after being my constant companions for 11 years) and these new pups (pound hounds) are forcing me to be active and excerise. One actually broke off the leash and I had to run for 1/2 block to catch her. Wow! I have not run since August when I used to walk/run 3 miles on the treadmill 3 x a week. I lost 10lbs since I had my attack and it was all muscle loss.

 
Old 02-28-2006, 08:58 AM   #5
duttin
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Re: Angry ,please read

Punkdizzle,

Mine was a referral after a Lumbar puncture went wrong and put me in bed for 2 weeks,the leg cramps and pain was aweful.I am actually seeing a neuromuscular/neurologist specialist.She has made copies of all my records and sent them to the clinics MS institute and they are correlating back and forth.Its a wonderful place and everyone on staff are very curtious.If you do a web search on the cleveland clinic you'll find a phone number to make appointments.Without a referral it may take a few months but well worth the trip.I got in on an emergency referral.Second opinions are good to have especially when so many other disorders mimic ms.

Toni

 
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