Seriously worried help
14 Dec 2013 at 6:03PM
following my recent post on my wife's situation her situation
has deteriated and now I'm getting seriously worried and to be honest
upset and very emotional a quick re run we went to Paris for our wedding
anniversary she was fine on way back she started feeling ill within two
weeks she had bad pins and needles in both legs and pain in her left
arm her legs she can't move when laying flat her arm is pretty weak MRI
scan on brain and neck showed a small patch on her brain which was and
to quote "inconclusive" also a electrical nerve test was done here there
is some confusion as when it was done the person doing it said there
was some define not difference between her left and right yet on the
return to see the neuro he said they appeared fine however on her
eyesight and arms it said normal on her legs there was just a set of
figures but no conclusion the neuro said he was going back to see the
nerve man for a definition . we are now waiting for another MRI scan on
her spine top to bottom and also a LP she is very unsteady on her feet
and has now been off work 4 months there is no sign of any improvement
she is receiving no medication at all Blood tests showed a low vitamin D
which she is taking supplements for
the last few days thou she says her legs have got worse and deep down I know she is worried as we all are I have gone private and have had to pay for a lot of this so far as the NHS is a complete joke I'm now finding it really hard going and very worrying she is normally so fit and active one test that really worried me was last time we saw the neuro he had her putting her finger on her nose and then puting it on his raised finger her right side it was fine on the left she found it almost impossible with her finger going in her eye mouth ear missing completely and with very jerky movements she was receiving physio but even they said that they thought she needed a plan in place as in their opinion she was getting worse
I just can't stop thinking about all the good times we've had together the laughter and happiness doing things together I love her to bits and would do anything to make her better this afternoon I actually sat in a coffee shop which we often used to go to on a Saturday afternoon if we went shopping etc and had tears in my eyes just wishing she was with me showing me the dress or clothes shed just bought this Christmas is going to be pretty tough going I'm trying to keep her moral up but sometimes I just think were in a crowd and on our own we had a wonderfull time in Paris and I can't help thinking if we hadn't of gone would any of this happened
the last few days thou she says her legs have got worse and deep down I know she is worried as we all are I have gone private and have had to pay for a lot of this so far as the NHS is a complete joke I'm now finding it really hard going and very worrying she is normally so fit and active one test that really worried me was last time we saw the neuro he had her putting her finger on her nose and then puting it on his raised finger her right side it was fine on the left she found it almost impossible with her finger going in her eye mouth ear missing completely and with very jerky movements she was receiving physio but even they said that they thought she needed a plan in place as in their opinion she was getting worse
I just can't stop thinking about all the good times we've had together the laughter and happiness doing things together I love her to bits and would do anything to make her better this afternoon I actually sat in a coffee shop which we often used to go to on a Saturday afternoon if we went shopping etc and had tears in my eyes just wishing she was with me showing me the dress or clothes shed just bought this Christmas is going to be pretty tough going I'm trying to keep her moral up but sometimes I just think were in a crowd and on our own we had a wonderfull time in Paris and I can't help thinking if we hadn't of gone would any of this happened
14 Dec 2013 at 11:40PM
I'm so sorry you are both going through this. I know how
scary it is, for both of you (I was hospitalised with my symptoms). I
assume that if it is neurological, going to Paris was not the cause and
it would have happened anyway, so there is no need to regret the
holiday. I can't remember how soon the MRI is but I hope that this
provides a diagnosis for your wife. At least then you can both move
forward.
15 Dec 2013 at 9:52AM
Two and a half years ago my husband got a PPMS diagnosis and
were in the same emotional place as you are. He was going downhill fast
and we were desperate. We knew there was no treatment for this type of
MS so after a LOT of research we found the Swank diet and then George
Jelinek's Overcoming Multiple Sclerosis lifestyle and got started.
To begin with he continued to go downhill, then things improved - honestly they did.
By the 8 month mark the tiredness had lifted, slurred speech was gone and he no longer had to get up to pee 3 or 4 times a night.
Now 2 and a half years later the only sympton he has is left leg weakness.
Yesterday we walked our dog for a couple of miles in a howling gale. The last time he did this particularly favourite walk was two years ago and but it was getting too much for him so he had to stop.
Yesterday he completed it fine - just a normal tiredness afterwards.
Please have a look at the OMS website. This lifestyle change has a major impact on so many people and if you go on the forum you'll find lots of help. It's NOT a quick fix but its a super healthy lifestyle and people are doing something positive to help themselves. I shudder to think where we'd be at this point if we hadn't made the changes when we did. Now it's our way of life and we love it.
All the best
To begin with he continued to go downhill, then things improved - honestly they did.
By the 8 month mark the tiredness had lifted, slurred speech was gone and he no longer had to get up to pee 3 or 4 times a night.
Now 2 and a half years later the only sympton he has is left leg weakness.
Yesterday we walked our dog for a couple of miles in a howling gale. The last time he did this particularly favourite walk was two years ago and but it was getting too much for him so he had to stop.
Yesterday he completed it fine - just a normal tiredness afterwards.
Please have a look at the OMS website. This lifestyle change has a major impact on so many people and if you go on the forum you'll find lots of help. It's NOT a quick fix but its a super healthy lifestyle and people are doing something positive to help themselves. I shudder to think where we'd be at this point if we hadn't made the changes when we did. Now it's our way of life and we love it.
All the best
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