I replied the other day, but I guess I pushed the wrong button and lost my reply.
Very sorry for the loss of your brother! Way too young to go.
Lose the flip-flops! I trip over the carpets, the cat, and my own 2 feet when I'm fatigued (most days). Flip-flops would just add to the difficulty of walking without getting hurt....I'm thinking steel toed boots might be the answer...God help anybody walking near you! Ha!
Driving. My GP orderred 'no driving' back in Feb (the start of my symptoms) Some days I feel I'd be OK to drive, but I don't take the chance. I was convinced to follow his orders when he asked me how I'd feel if I hurt or killed someone while behind the wheel. I have to rely on my wife to drive me everywhere, and that's working out fine for me.
2 years seems like a long time between MRI's! I'm getting one in August, which will be 6 months since the first two. I guess if there was no noticable progression of symptoms 2 years would be adequate, I don't know...
Take care of yourself, and watch your step ;)
I had my first MRI's at Image One MRI in Kelowna. I had to have 2 because the tech and the Doc's wanted to do an enhaced after the first one. This is a private facility, I paid for the MRI's myself rather than wait for the medical plan to get to me, I was told at least a three month wait, and my wife and I were too scared to wait.
The attending Doctor from my day in the emergency ward (Feb 10. '09) at Shuswap Lake Hospital started the ball rolling by requesting an MRI through Interior Health. I got a letter 2 weeks ago saying an MRI appointment has been made for Dec 7, '09 at the Kamloops hospital. That would have been a 10 month wait! I could have been long gone if at been a tumor like both the Neurologist and the Neurosurgeon thought it was. My next MRI will be paid by the med. plan, and it's in the Kelowna hospital.
As for the driving, my symptoms range from numbness to uncoordenation to fatigue. Probably the most dangerous would be cognative issues, lack of concentration, that sort of thing. I also walk like I'm drunk a lot of the time, especially when tired. We returned from a trip to Kelowna yesterday, my wife was driving, and I was holding on for dear life. It felt like we were just flying! I said is your new name Kelly Andreti? She looked at me and said "I'm only doing 70km, and the posted speed is 80". It sure felt fast to me, and I've never been known to hold up traffic.
I agree about the treatments. I'd want to know a whole lot about any drugs and their side effects before trying them. I'm still 'probably MS' so I'm hoping to know one way or the other after Aug MRI. If the Doc's want to prescribe any meds, I'll read all I can about it before deciding one way or another. If they can treat the fatigue and brain fog with meds I'd be very interested! I'd like to at least get a little closer to normal so I can drive, go back to work, and play as hard as I used to.
Neuroplasticity, hmmmm, I guess I've got more reading to do.
Progressive ms. Do you feel any remission? When I was first hit most of my numbness was on the left side, but slowly over the months it is now mostly on my right side. I have gone 5 or 6 days once where I felt 90%, then things went down hill again. I'm wondering if it's normal to go up and down like that.
Anyway, good to read your posts, take care
I was reading your post and I wear flip flops everyday. I have had a few small tumbles due to the flip flops but I can't stand anything to touch my feet. i know I should have some sturdy lace up tennis shoes and be safer but I just can't do it. The winter is the hardest time for me because of the cold. I will wear very low cut socks and mules (shoes with no back) so that I can slip out of them quickly when it gets to be too much. It's almost like my feet are claustrophobic. I have even been seen in the winter out in my flip flops.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
Catfreak, I have problems wearing flip flops or any shoes without backs so should not of been wearing the flip flops. Cannot hold onto with toes and worse after wearing awhile. Also lack of sensation in feet and foot drop that can happen after walking for a short time. Use to wear shoes like this a lot. Again, my new normal
You went to VGH for your MRI's. What happened to ......I'm dying here....what the hell....my daughter graduated from there.......brain dead...UBC that's it... UBC weren't you going to be tested at UBC?
I know your age can seem like a negative in this search for answers, but look at it this way....the older you are ...the uh ... hmmm older you are. Aging beats the alternative! It really does! I know, I know, I'm only a 53 year old pup, but I'm glad for every year I can squeeze out of this life!
Nice to hear from you, hope you're not working too hard on the farm. All the best
Congratulations on your new future grandchild! That's cool they sent you an ultrasound!
They're getting a grip on the fires around here. The Notch Hill fire is 60% contained, and most evacuation orders have been recsinded. We were living in choking smoke till a couple days ago when it rained. Now we can see and breath again.
Sorry to hear your MRI wasn't much use to you. I wouldn't bother with a copy of the MRI though, you're better off I think with a copy of the radiologist's report. Hopefuly your Neuro can shed some light for you.
You mentioned your "overactive responses to noise, movement ect." That is very interesting to me, I have the same issues. Jump outta my skin, heart pounding, wide eyed reaction to........nothing.
I had an MRI a couple weeks ago, got the radiologist report from my doctor. Not sure what to make of it. Some bulging disks, etc., in the neck but no neck lesions. At least 9 lesions in the head now. Six months ago I had one large lesion (which was biopsied), now 9? something is going on in there. I'll be seeing my Neuro the end of Sept., maybe he can come up with something. Seems to me if they can't determine MS for sure, they should continue testing for all other possabilities...but what do I know?
The report said " at least 9 supratentorial white matter lesions consistent with demyelination but do not meet Macdonald criteria for MS." The radiologist did not compare it to my other MRIs, which were done by a private outfit, he either didn't know, didn't care, or couldn't access them. Reflexes tested normal, but I will discuss my extreem jumpiness, overreaction to sounds, movements, etc. with Neuro. I'll let you know if he has any interesting comments on this.
Seems odd your Neuro would give your age so much weight re-MS dx. Seems to me if it's MS in a 28 year old, it should be MS in a 60 y.o..
I'm at a point where I don't really care what particular demyelinating disease I have, MS or whatever...I just want to know what it is and what my options are re-possible treatments. I'm sure you know what I mean.
Another cloudy cool day, YEAH! Mike
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