needed to talk

A forum for discussing the unique concerns of senior members of the Multiple Sclerosis "Club."

needed to talk

Postby pinda » Sat Jul 11, 2009 5:20 pm

A few off days and had another fall. Seems my right foot is dropping more and I was wearing flip flops. Guess I'll have to stop wearing. Bear feet are OK so will do. Can feel more when nothing on my feet. Nothing broken, just bruised pride and skinned knee. My husband was near by and got a scare, think worries about the small changes. Nothing big, just more fatigue, more sensitivity, guess more drop foot, (have to be more aware), more of most of my symptoms. 4 weeks ago I drop to the floor after my brother walked behind me and just brushed my shirt with his. Went straight to the floor and could not get up. Brother and husband picked me up by my elbows and put me in the chair beside me. Sat for half hour and than was able to get up and sort of walk. Had more problems walking for a few days. Very weird. Did not drive for awhile and now just drive me. Not sure how I will react if something startles me. Have had problems while driving before. Did talk to the Neuro last visit in June and he said I was the best to know when I should drive. After a few times driving seems same as before fall. Will see how I go with myself before driving others. Anyone else experience? Have a MRI ordered but seems it will be next year, March. On a cancellation list so maybe sooner. Dr. wanted to see if any changes after a year or so, March will make it over 2. Could get sooner with another machine at another hospital but he wants a comparison from the same one. All been at the same hospital. Have not waited this long before. OH well, not sure there will be any changes or a confirmed dx. Nothing else shows, to me it is MS but if something else that could be treated that would be great. Need to live life as it is and enjoy every day. Just lost one of my brothers to cancer way to soon, 65, and he sure did live his life as full as he could with the time he had. A good example of enjoying and living life. Enough self pity now and on with living. Thanks for listening, Linda
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Postby Mike56 » Tue Jul 14, 2009 7:19 am

Hi Linda
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 ;)

Mike
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Postby pinda » Tue Jul 14, 2009 10:26 am

Hi Mike. Thanks for the post. The Neuro wanted another MRI because 2 more lesions were seen on the last one and he wanted to see if more changes within a year. Where did you have your MRI's? Mine have been VGH and usually the wait is no longer than 3 months or less. UBC has a shorter time but no call to go there after asking receptionist if I could have there. She felt he would want it where my others had been for a comparison on the same machine but would ask him and phone if a change. I'm on a cancellation list but that means land and cell phone always within reach from early to late 7 days a week. As to the driving, what symptoms where you having to suggest not driving? A friend of mine uses a hands only device and may check into if my legs are not working all the time. She has transverse myelitis, not sure of spelling but another ailment that seems to be related to MS but does not progress after first attack. She had to take lessons in Van. before getting her license. Always the waiting that gets me. Would be good to have a dx but at least the Dr. is still looking and not giving up. So far MS is the one it is looking like. After attending a talk in Surrey by the Dr. from the MS Association it looks to me that I have Progressive MS that hits people over 40. Comes on slowly with no real remission. No treatment is suggested except to ease symptoms. Not sure I would do any of the treatments anyways, seem to have a lot of side effects. Have you heard of Neuroplasticity? There is a book "The Brain That Changes Itself" by Norman Doidge, Stories of Personal Triumph from the Frontiers of Brain Science. Gives one food for thought. All the best, Linda
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Postby Mike56 » Tue Jul 14, 2009 1:51 pm

Hi Linda

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
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Postby catfreak » Tue Jul 14, 2009 7:26 pm

Linda,

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.

Cat
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Postby pinda » Thu Jul 16, 2009 2:30 pm

Mike, my symptoms are always with me but do change. My new normal. Do not have days where everything is gone. If I do too much, as I did yesterday, cannot do much the next day. I'm worse in the heat, can work on our farm shorter periods, not after 11:30 am but can again around 8pm or so. Has to do with heat. Can't do everyday. Have lots of sensation problems that change, walking is worse the more I do so use a stick. No big changes which would help with diagnosis. Have new symptoms that show up through time but not big ones. Seem to be reaction problems, over active reflexes, and sensory like feeling hot when others do not or cold from inside out when not cold out, hot water in shower feels burning so have almost cold shower that feels warm, etc. When I get a virus a lot of the symptoms come on strong. Do feel I have Progressive MS that affects people over 40. Would be good to know what I have :)

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 :)
Linda
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Postby Mike56 » Sat Aug 22, 2009 9:56 am

Hi Pinda'

I think you mentioned not to long ago you were getting an MRI 2 years after the last one, and were hoping for some answers. I just got an MRI yesterday, and it got me wonderring how you made out. Feel free to ignore me if I'm being too nosey.

Take care, Mike
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Postby pinda » Sat Aug 22, 2009 3:02 pm

Hi Mike. Yes, I had an MRI a week ago Thurs. Was booked for March but was on the cancellation list for VGH. My neuro wanted it to be there because of comparison with my others done there. Well, that was for not. They used the newer machine, tech said it would be OK. I picked up the report and a CD of my MRI last Mon. and the report said the MRI could not be compare with last ones because the resolution was better on this one and maybe the new lesions he was seeing were not big enough for the older machine. Also one of the 2 new lesions seen in the last MRI was gone. I think that is a good thing. No dx of MS, do not fit the criteria. Have all the problems but not the evidence on MRI, at least not conclusive. My age is a factor. I'm 61 and after the MRI almost 2 years ago neuro said he would dx MS if I was in my 30. When I asked what else it could be he said he had not found anything else it could be. He is still looking for why I have these problems with central nervous system, that is the good thing. Will be seeing him in Sept. so will talk what else I can do re some of my symptoms and what else to look for. Maybe it is something that can be treated. I feel it is the slow progressing MS that hits people over 40 but maybe something else. Also think the problems are in the gray matter, which was not looked at. Think it has to be another kind of machine to do. The neuro had asked for my shoulder area to be looked at too re a swelling in the clavicle area, that was inconclusive on the report too. Seems there were no pictures of the area of concern. Some of my neck and back shoulder area though. When my husband and I looked at the CD we could see my shoulder area from the back was raised and swelling in what looks like the muscle on the side I have the swelling. I paid for the CD of the MRI, $60.00 report was no cost, because our son is working with MRI's at University and wanted to have a look. He knows people looking at MS so maybe he will have them look at. He is studying Psychology and doing his Phd. using fMRI's in research to see how we learn things. Has a Biology degree so maybe he will see something too, that I have a brain :) Long explanation re my MRI. Think I will not have another if asked. They only see some of the problems and not always clear what is going on. Especially as we age. Will be seeing my own Dr. before the neuro so maybe she will have some suggestions. Need to have this swelling looked at too. Hope your MRI sheds some light for you. This not knowing is the worse part. Feel I could help myself heal if I knew what and where the problems were. The neuro laughs at me when I say this but do believe it could help. If you want the CD of your MRI or the report, just asked the hospital. No cost for the report. Should keep records of all your tests, may need in the future. Even though my husband and I do not understand what all the pictures show was interesting to look at and see how many are taken. Anyways, all for now. Enjoy the rest of summer and keep smiling, Linda
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Postby Mike56 » Sat Aug 22, 2009 9:47 pm

you're right Linda...not knowing is the worst!!!! But. on the fun side.\, my wife and I went fishing tonight.. kept 2 nice 5lb lakers. 1st time I've felt well enough to go out fishing in a long time!! And got some awesome pics of a scary interface fire in the Notch Hill area south west of where I live.

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

Mike
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Postby pinda » Fri Sep 04, 2009 7:46 pm

Hi Mike. I did not have the MRI at UBC because the neuro wanted to compare my previous ones from VGH. Because I asked for the results and paid $60.00 for a CD of the images received over a week ago. See my neuro Sept. 18th. Very interesting to see all the pictures they take and how you can go into the brain but not much in the report because the machine they used is the newer one and my others were done on the older. Seems the new lesions he sees could have been there before but not seen. Feel this was a waste of time and $ for the system. Do not think I will have an MRI again. The neuro asked for my neck and shoulder area to be looked at too because of swelling in shoulder area. That was inconclusive because not enough pictures of the area. My husband and I can see swelling in my back on the left side but no pictures of the clavicle area where the swelling shows. Will see what the neuro says. I have some questions re my overactive responses to noise, movement etc. that are increasing. Have not driven all summer and would like to if able to figure out what is going on. Have you had your MRI and if so, any questions answered? It can be a long journey to figure out what is going on. As for our farm, it is growing and we are selling at the Farmers Market and our gate sales at the farm. My husband is doing more of the work this year because I am bothered by the heat more, no energy, less ability to work, and fatigue. Will have to look at what works for both of us so we can still do next year. Some good news, our youngest son and his wife are 10 weeks pregnant. They sent an ultra sound of the baby and phoned at the same time. We are very excited and want to tell others in the family but have to wait till they tell our other two sons. One is in London and the other Australia. Ones pregnant are in Ottawa. How are the fires? We hear things are settling down with cooler weather but hot again here. Should have rain tonight, need for the garden. All the best, Linda
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Postby pinda » Fri Sep 04, 2009 7:50 pm

Hi Mike. Seems I have repeated myself. Sorry. I'm not very good at putting info here when not seeing what I wrote before. Memory does not help me much. Linda
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Postby Mike56 » Sun Sep 06, 2009 4:55 am

Hi Linda

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?

Mike
Last edited by Mike56 on Mon Sep 07, 2009 5:52 am, edited 1 time in total.
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Postby pinda » Sun Sep 06, 2009 11:40 am

Hi Mike. Glad the fires are getting under control. Hopefully this rain will help. Sure is helping our garden. Did your MRI report say anything about MS? The one before my last one said could be MS when 2 more lesions showed and they were in an area that could show MS. All very inconclusive. I have about 14 or 15 lesions now. Have been told because older could be natural for aging but if 28 years old would say MS. As for the over reactions, are your reflexes overactive when tested by the neuro? Mine have been all along but the reaction to noise, movement etc. has been more gradual with an increase the last year or so. Was tested for seizures and OK there. Guess we are both waiting to see what the neuro will say re the MRI. Enjoy the rain :), Linda[/b][/u]
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Postby Mike56 » Mon Sep 07, 2009 6:18 am

Hi Linda.

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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