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Slowly Getting Worse

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Old 01-23-2008, 09:40 AM   #1
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Join Date: May 2006
Location: england uk
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topsy123 HB User
Unhappy Slowly Getting Worse

Hi All,
I know Iv asked lots of questions and posted alot on these boards but I just need to ask more things and talk.
Have been refered to an MS specialist in Feb. Also going for another MRI next week. I am aware that different people who have MS may have different symptoms. So Im not asking for a general list, I know that there are common symptoms that apply to most. Myself, I have never had optic neuritis, my vision always been good, Until last November when my focus started going blurry. I was like a camera that kept zooming in and out. Im ok now though. Since November I havent got back to what I was before. I go out shopping and even though I can walk, it becomes increasingly difficult to put one foot in front of the other. My left leg is worse, if feels tight and numb. I end up shuffling, small steps. My head feels dizzy, I am unable to go to fast for fear of falling over. The pain in my lower back doesnt help much and my posture has altered somewhat.
I go to bed at night and by the time Iv climbed the stairs Im worn out, almost out of breath, and then the spasms start, they rip through my right side and are either very annoying or just plain uncomfortable. My head is is a constant fog when I walk. If Im just mooching around the house its not to bad, its when I walk for any length of time its hard and quite honestly getting worse.
Yesterday I spent most of the day having full blown body spasms. I seem to be going to the toilet every five minutes.
I wake up feeling ok, not to bad, then I get up and Im stiff and my head is foggy again, its like the minute I get on my feet my brain starts playing up.
Ok, is this an MS thing?....The reason I ask is I have had lots of tests as told in my other posts. I have had a vasculitis screen done and it came back normal. Take now for instance, Iv been sat down for half an hour and I have this sort of dumb aching in my legs. However I got up to make a cup of tea and was able to walk alot better to the kitchen. If I walk alot further though it starts again, the slow steps, the dizzyness, foggy head, a feeling of being totally drained.
I know I shouldnt but yes I smoke, and we all know its bad for you, but Im SO worried this may be a vascular problem. Yet as mentioned earlier a Vascultis sceen was done and came back normal. Clotting studies normal aswel. So should be re-assuring, yeh?
My questiones here are do other people get what Im getting. Is this something people with MS get. I appologise for being long winded and going on, but Iv gone from being ok from time to time, to having these symptoms everyday now and become more dependant. I cant go shopping unless my partner is with me, and Im tired out. I find mornings the worse. Im begginning to dread going to bed cause I know when I get up I feel terrible....
I admited to my parner today I just can't go on like this and maybe a wheelchair would help at times. My tremors come and go aswel. Im worn out and frankly very down today....

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Old 01-23-2008, 10:56 AM   #2
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Location: Arizona, USA
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Slowly Getting Worse

While many of your symptoms are MS-like, I thinkthe final diagnosis would best be left to a trained medical doctor. My MS goes in cycles without ever letting up. Some days or weeks are worse than others. You certainly might want to look into a powerchair. A manual wheelchair would not, in my opinion, be good for you with your fatigue. I use a powerchair about 90% of the time indoors and I have a 4X4 powerchair outdoors on days when I am too tired even to rely on my service dog. Eye blurriness might be MS, but agaian, it could also be vascular or a separate problem all together.

My eyesight has been blurred before and my right eye is so light sensitive that I cannot open it without the assistance of polarized sunglasses. Some days, about 15%, even the sunglasses do not help. I have lost my sight on at least 4 occasions, but it was only temporary.

You will have bad days. On those bad days, have tools/aids to enable you to maintain some independence, but on your worst days, please ask for help. There are times when it is just impossible not to ask.

If you can, try about 3-4 days resting and "vegging-out" with the television or a nice book. I have found that Saturday-Sunday is my time to slow everything way down and recharge. Before a big outing/event, spend 2-3 days resting-up and then give yourself the following day to rest again. This has helped me a great deal. If I ran 100% every day - all day- I would be bedridden by Thursday. Instead, I find my life is of better quality when I slow things down.

I do not wear a watch, rarely watch the clock, and occasionally look at the calendar. To escape from the time constraints of modern life brings a since of refreshment. In 2002 when I knew I could no longer work, I took all my business suits, most ties and all but 2 dress shirts and doanated them to charity. I changed my closet to pullovers and loose clothing that is easy for me to dress myself.

I shall pray for you and hope that whatever is ailing you can be determined by the doctor. If it is MS, learn to slow down and take things only as you are able.

My MS will continue to get worse- progress- as MS is a progressive disease. BUT you can enjoy life just the same if you make the right decisions and tune into what your body is saying to you. Your quality of life does not have to suffer. MS can only rule over you if you allow it. MS does not fear me nor does it worry me, fear-worry-anxiety are not from God. STAY POSITIVE!!

Old 01-23-2008, 11:57 AM   #3
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Join Date: Apr 2007
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Bearygood HB UserBearygood HB User
Re: Slowly Getting Worse

Hi, topsy! As has been the case with you, no easy answers. The experiences I've read about have run the gamut from all sorts of wacky sx and ranging in severity to just about no sx to severe and everything in-between. But one thing I do want you to know that although there is no gurantee, this might just be a rough patch you're going through, whatever this turns out to be! No gurantees but it is possible so please try to stay optimistic. I know it's difficult, especially with everything you've been through. I hope you get answers soon because I'd bet that unto itself would give you some relief!!

Please continue to keep us posted and I hope you feel better tomorrow.

Old 01-23-2008, 12:04 PM   #4
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Bearygood HB UserBearygood HB User
Re: Slowly Getting Worse

Originally Posted by MSJayhawk View Post
My MS will continue to get worse- progress- as MS is a progressive disease.
It is true that MS is considered a progressive disease but also true that some people progress very slowly and some seem to not even progress. There is even a school of thought that it may plateau, at least in some. Dr. Randall Shapiro (considered to be one of the leading doctors in MS) has some interesting thoughts on this subject. Though, his thoughts aside and anyone elses, the one thing for sure with MS is that nothing IS for sure. Just no guarantees available.

MSJayhawk, you have a great attitude and where I always agree with you is that optimism is the way to go.

Old 01-23-2008, 02:23 PM   #5
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Join Date: Jan 2006
Posts: 44
Re: Slowly Getting Worse

I too have been getting worse as years go by. But, try to think of all the things you can do. I could give samples, but the list would be endless. For instance, I could sit on my porch on a beatiful summer morning, have a cup of coffee and read my newspaper. Sounds corny but that is what you must do.
I had eye problems once but it cleared up in about 6 weeks. (I don't know how old you are, but at my age none of my healthy friends could see either.)
You're lucky to have a partner to share small things with. I hope I'm not being too casual with your concerns, but I know I could sit & lament & burst out into tears.

Old 01-24-2008, 05:20 AM   #6
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Location: england uk
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topsy123 HB User
Smile Re: Slowly Getting Worse

MSJayhawk, Bearygood....Thank you, thank you, for your reply's. I was having such a bad day yesterday. I don't often get to the point where I feel like throwing the towel in. I have remained as positive as I possibly can up until now. I so needed to vent and do the "why me" bit. Pathetic, I know, I could be alot worse.
I thank god for my wonderful partner, in that department I just couldnt ask for more. He's so caring, understanding, and positive that very soon we are going to get answers. He says having answers won't change anything but it will maybe open doors in terms of the help that I might need from time to time.
My problem is that even though I am usually able to stay positive, I am a bit of a worrier. Having an answer would help me to see the future in a different light. If I know what I am facing I can plan and deal with things.
Its obvious they are looking to see if I have MS due to the positive lumbar puncture, I have a very high concentration of Oligoclonal bands in my CSF. So next week its the MRI of brain, thoracic and cervical. Yet being the worrier that I am, I am more worried that its vascular than MS itself. Yet the vasculitis screen that was done is normal!......Hows that for being stupid.
Does a normal Vasculitis screen rule vasculitis out for definate....(answers on that one please!)...
I am feeling more positive today, also the weather is lovely today and that helps. Here in the UK it has rained almost constantly since Christmas, and its cold and dark and I just hate it.
You guys deserve a medal for the support you have shown me since I came to these boards. Considering most of you who reply do actually have MS and Im sure are alot worse than I could imagine, I thank you for your time and understanding when Im throwing a wobbly or just need to vent and talk....
Take care...and thanks...

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