A long journey

[Paul_and_Sue_Wood]

Hello all,

I thought i would write a brief history of our journey.

Sue and I have been married for 34 years this year and we have been lucky to do many things in our life.

However in 2008 she her finger on her right hand started to tingle after a fall. During the following year she started to loose her balance and the tingle moved through her hand and up her arm. Eventually our GP told her to pack up work and referred us to the Neurologist at the Queen Elizabeth Hospital, Birmingham. They did scans and tests but couldnt find the cause. The tingle developed into a skin pain, which Sue discribes as being scalded or like a "chinese burn". The consultants eventually diagnosed "Idiopathic Sensory Polyneuropathy" and prescribed initially Gabapentin.

Over the next 8 years Sues condition has deteriorated with trips to the consultants and all sorts of MRI, CAT, Xray scans and more, but with no change in the diagnosis. The condition caused changes for Sue with the Numbness and tingling moving to both hands, arms feet legs and more, loss of taste, changes in eyesight, loss of balance, tremor, shakes, spasms, sleep breathing changes and more. With more recent changes in ability to coordinate, black outs, swallowing, temperature regulation abd extreme tiredness.

We have been through maximum doses of Gabapentin, Pregabalin and Duloxatine to numb the pain which had thier own issues, but have now settled the pain with a morphine based patch ( which has its own dangerous issues if you are not carefull) along with 4 other tablets...

Last year our consultant said it is "possable" you have MSA, but we need a brain scan to become closer to a "prabable" But Sue cant lie flat so having an MRI is not possible at this stage.

Throughout this Sue and I have just got on with life and carried on, meeting every challenge head on, because what can we do......panic? blame? have we caused it? No its just happened and we have been lucky to have an active life up to that point with baloon rides over the Nile into the valley of the kings, Motorcycle rides over Europe running a club with 150 members and more.....

We are grandparents to 6 (soon to be 7) grandchildren with the eldist 16 this year.

Want to know more about our journey...just ask...

[Yanno]

Hello Paul, good to see you on here. Will catch up when we meet for coffee on Friday.

I must tell you of some plans that our local hospice, St Richards, have of expanding with £3m build. They are considerably expanding there Living Well capacity - all about life improvement, support etc.

Take care, Ian

[Rankin63]

Hi to you both

I have had a similar journey to Sue ' s but mine started with tingling in my left leg before balance issues and falls. I was given the diagnosis of cerebellar syndrome with possible MSA a year past February and saw my specialist once since and given the same diagnosis.

All I can say is keep doing what you're doing and try to make the most of life and hope that your illness is slow to progress. Best of luck!

Regards Mina (Rañkin).

[butlin]

Hi just reading you and your wife’s journey with the beast her symptoms are very similar to mine but I am interested that see has a problem with her eyes can you please give more information on this as I have developed a problem with mine as my lens in my glasses seem to last only about 3month and no one seems no why kind regards Chris

[Paul_and_Sue_Wood]

Hi, Sues eyes have changed a couple of times during the years with her condition with lots of "floaters" in the lens at one point with "flashes" also, but that has now gone away, or the brain is compensation...Her long and short sight has also changed, but this could be an age issue anyway.

With MSA the condition changes many things as you progress and every person has a different story and timescale.

If you want to know more contact MSA Trust nurses and they know a lot more than i do.

Paul

[butlin in reply to Paul_and_Sue_Wood]

Thank you for your advice kind regards Chris