Hello, my name is Jeanette
I’ve struggled with this Forum previously and became frustrated but I think that was because I couldn’t concentrate. Now that I am a little more focused I can see how this forum works - thank goodness ! I’ve wanted to go on this forum since July
I am 58 years old and I was diagnosed on 19th June 2020. My symptoms began in February 2019 when I started to have cramps and twitches in my lower legs and arms. I had difficulty climbing stairs and generally felt a loss of strength in my arms and legs. I used to run half marathons and always loved running. I saw my GP and started having blood tests
I fell whilst running in April 2019. I found walking up gradients were difficult and remember crying as I walked up a slight hill to my car from the Dr’s Surgery. I asked to see a Neurologist but the waiting list was too long so I decided to pay to see Dr J Gareth Llewelyn in June 2019. He checked me over tested my reflexes and listened as I told him my symptoms. He said I was suffering from anxiety.
I started to have sessions with a chiropractor twice a week, swim and rest.
I fell twice more, returned to my Dr and stated I was deteriorating and I saw another Neurologist, Dr Fardy Joseph who booked an MRI, which showed nothing out of the ordinary and he booked me in to have an EMG.
We, my now husband, sold (SSTC) our house in October and found our forever home. We planned our future... ( move, make modifications to our new home and organise our wedding )
We moved in February, I fell downstairs on the 3rd March and the EMG which was due on 24th March 2020 was cancelled on 23rd March due to COVID.
I didn’t know what was wrong, I believed I had ME. I rested and eat myself healthy. I lost a stone in weight making me 9st and in May 2020 I was unable to walk unaided.
I contacted Dr Joseph again who booked me in to see Dr Kenneth Dawson. I was ‘relieved’ to have my diagnosis on 19th June but devastated. My life had been on hold for 18 months and despite the diagnosis I felt an incredible need to focus on what I had to do, prioritising and getting on with my life. I was upset that I had been in limbo for such a valuable length of time
I realise I have been through a grieving process since June 2020.
I have kept busy by prioritising and organising my life. I was like someone on adrenaline or caffeine for the first few weeks. I bought a motorised chair, stairlift and walking aids to assist me
I had so much to organise... one thing to do was to get married before I got much worse
We married on 19th September !
My husband is still working but takes Monday’s off. My sister stays every other week. I have fabulous carers who visit every day, a caring husband, a lovely sister, two friends who are supportive and caring and a Jack Russell (Molly Dog)
I am now hoping to get a Wheelchair Accessible Vehicle to help me make the most of the life I have...
I have been waiting since June to get an adapted bathroom... nothing progressed yet except a plan
I remain positive and strong. I realise I am fortunate to have this forum, my family, my friends, my dog, my life, my body, my spirit and my personality.
I hope I can meet and chat with you. I would like to hear your stories and know that you too are similar to me, struggling but persistent and still achieving goals
I send you warm wishes, strength and courage
Jeanette
I am 58 years old and I was diagnosed on 19th June 2020. My symptoms began in February 2019 when I started to have cramps and twitches in my lower legs and arms. I had difficulty climbing stairs and generally felt a loss of strength in my arms and legs. I used to run half marathons and always loved running. I saw my GP and started having blood tests
I fell whilst running in April 2019. I found walking up gradients were difficult and remember crying as I walked up a slight hill to my car from the Dr’s Surgery. I asked to see a Neurologist but the waiting list was too long so I decided to pay to see Dr J Gareth Llewelyn in June 2019. He checked me over tested my reflexes and listened as I told him my symptoms. He said I was suffering from anxiety.
I started to have sessions with a chiropractor twice a week, swim and rest.
I fell twice more, returned to my Dr and stated I was deteriorating and I saw another Neurologist, Dr Fardy Joseph who booked an MRI, which showed nothing out of the ordinary and he booked me in to have an EMG.
We, my now husband, sold (SSTC) our house in October and found our forever home. We planned our future... ( move, make modifications to our new home and organise our wedding )
We moved in February, I fell downstairs on the 3rd March and the EMG which was due on 24th March 2020 was cancelled on 23rd March due to COVID.
I didn’t know what was wrong, I believed I had ME. I rested and eat myself healthy. I lost a stone in weight making me 9st and in May 2020 I was unable to walk unaided.
I contacted Dr Joseph again who booked me in to see Dr Kenneth Dawson. I was ‘relieved’ to have my diagnosis on 19th June but devastated. My life had been on hold for 18 months and despite the diagnosis I felt an incredible need to focus on what I had to do, prioritising and getting on with my life. I was upset that I had been in limbo for such a valuable length of time
I realise I have been through a grieving process since June 2020.
I have kept busy by prioritising and organising my life. I was like someone on adrenaline or caffeine for the first few weeks. I bought a motorised chair, stairlift and walking aids to assist me
I had so much to organise... one thing to do was to get married before I got much worse
We married on 19th September !
My husband is still working but takes Monday’s off. My sister stays every other week. I have fabulous carers who visit every day, a caring husband, a lovely sister, two friends who are supportive and caring and a Jack Russell (Molly Dog)
I am now hoping to get a Wheelchair Accessible Vehicle to help me make the most of the life I have...
I have been waiting since June to get an adapted bathroom... nothing progressed yet except a plan
I remain positive and strong. I realise I am fortunate to have this forum, my family, my friends, my dog, my life, my body, my spirit and my personality.
I hope I can meet and chat with you. I would like to hear your stories and know that you too are similar to me, struggling but persistent and still achieving goals
I send you warm wishes, strength and courage
Jeanette
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