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Help Steph's Diagnosis!

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Hi Since October 2019 my Wife Steph has inherited a progressive Neurological condition with Symptoms similar to MS and Motor Neurons. Her symptoms are tremors on her right side only, Extreme fatigue, Weakness in her right hand which effects grip which affects her ability to feed herself due to dropping things including Cutlery. Excruciating pain in her legs and right upper quadrant for which she takes Morphine and Tramadol. She's had many falls from her legs giving way and now requires a Wheelchair and aids around the house including a rolator, a walking stick but still needs supervision as her leg gives way often unexpectedly. She has lost 3 stone in weight and is now 6st 3lb and it breaks my heart just watching her waste away. Her swallowing is affected and struggles to eat anything, I have to encourage her to eat as she feels sick all the time, she has supplements but she's not taking the required amount and I can't force feed her, it really is heartbreaking. She has severe Asthma which has worsened since all of this and now has Nebulisers at home to help her breath better. She is in bed at 16.30 everyday. She is normally outgoing, full of life and an amazing Mum to 4 children. Our life is so hard and I have had to give up work to care for her but it seems under the NHS we are waiting and waiting for a diagnosis. The Children have to see her fall and suffer and they are begging her to get better, even our youngest two of 3 and 4 years of age. It really is tough on them and also on Steph as she cant play with them anymore. She had an appointment in April and it was cancelled because of Covid 19 and we have not been contacted until this month but it seems we are just getting nowhere with the Consultant who seems not interested. For this reason we have contacted a top Neurologist in London and I spent most of what we had on the consultation. He seemed very interested and came up with a plan of scans and procedures to get to the bottom of it, trouble is the cost as for all the tests, treatments and travel comes in at £7000. She needs specialist treatment and a series of Scans to hopefully find out whats up with her so she can get on with her life again, we dont know what else to do but it sounds promising with this Consultant in London. Her quality of life is non existence and i just want her to get the help she deserves especially with this COVID-19 pushing things back further, I know its important to keep everyone safe and the NHS have done brilliant but it doesn't help my Steph. This is why we have made the decision to go private as I feel with all this weight loss and waiting for appointments it may end up in tradgedy for our amazing family. We would be extremely grateful if you could help us out by giving us what you can without breaking the bank and I thank everyone in advance for your generosity.

Organizer

Liam Hughes
Organizer

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