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Old 09-18-2019, 06:11 AM
djl87 djl87 is offline
Junior Member
 
Join Date: Sep 2019
Location: UK/CHINA
Posts: 7
3 yr Member
djl87 djl87 is offline
Junior Member
 
Join Date: Sep 2019
Location: UK/CHINA
Posts: 7
3 yr Member
Default Autoimmune Neuropathy - My story of delay after delay in diagnosis .

On December 29 2018 I received a Hepatitis B vaccine in China ( Where I currently work) . The following day I awoke to a feeling of pins and needles in my right leg. I like everybody else have had pins and needles , except that this was different , it would not go away . Over the following days the pins and needles started to spread round my body - you name it legs arms face stomach . I being a little naive put off going to hospital , believing it to be a possible mild reaction to the vaccine - something that would just go away . By the third week of January the pins and needles were still present , although decreasing slightly, and I had developed burning pain in my legs . At this point I decided to seek out care at a local hospital. The neurologist I saw was dismissive and suggested that the vaccine could have just 'excited the nerves ' and this was nothing to worry about !! By the end of January the pins and needles and burning sensations had decreased dramatically . I believed that this was the end of it . within a matter of days I developed pain in my left arm and thighs accompanied by body side muscle twitching . This continued into the first half of February to the point where i could no longer sleep well due to this throbbing pain in my arm , plus the body wide muscle twitching. At this point i googled possible causes of persistent muscle twitching and you guessed it , motor neurone disease is a leading cause. Depressed by this revelation and after getting myself into a state of anxiety , I contacted my mother , who suggested i get back to the Uk asap . The doctors in The Chinese hospital were dismissive of my symptoms suggesting that nerves were just excited etc. On my return to the UK i saw my local GP immediately , and he did not have any idea what could cause this combination of symptoms . He did not even refer me to a neurologist . He suggested that the vaccine shouldn't cause anything major and that the symptoms would just pass on their own.. what a load of crap ! my symptoms continued to get worse.. nighttime nerve pain was unbearable and the muscle twitching and pain continued . a visit to the local Accident and emergency department also did not help. A physical ( not a neurologist) claimed that a vaccine would not cause these symptoms and that it would just pass. For those who are not familiar with the UK nhs system - due to a lack of specialists there is no resident neurologist in my local hospital. the physician who saw me in A+E said if the symptoms persist you can see your gp who will refer you to a neurologist. This was MARCH 7 2019. My symptoms had been progressing since December 30 and this was not an emergency ? Come on! And so with no other option we sought out a neurologist privately . on first visit to the neurologist he claimed that after a physical exam , all was ok. Yes i passed the strength tests etc but i felt dreadful , had muscle pain and widespread twitching. he put the twitching down to anxiety!!! so another month passed and i felt dreadful , by now i was seeing a psychologist because i had become depressed that i had a serious neurological condition such as ALS and that i was being let down and falling through the net. By april we returned to the neurologist after numerous visits to a and e had failed to gain anything. In this second visit we insisted on him referring me for an EMG and nerve conduction study to which he agreed.. By this time my left and right arm and both legs showed visible muscle atrophy ... I was convinced a diagnosis of ALS was coming. In MAY 2019 , ( nearly 5 months after the onset of symptoms ) I was diagnosed as having a small fibre/sympathetic nerve and motor neuropathy . An autoimmune reaction to my vaccination similar to Guillian barre syndrome.. the neurophysiologist was shocked at how i had been let down so many times and also told me how lucky i was not to have died. I obviously avoided the most severe form of neuropathy - I was not paralysed and maintained the ability to walk. Full Recovery may take a total of 2 years to occur , as nerves repair so slowly . At the time of writing ( September 2019) my muscles have regained some mass and my symptoms have improved dramatically . Muscle twitching and muscle pain has decreased dramatically although i still have occasional symptoms. The muscles are still quite soft but are regaining their bulk slowly but surely. daily exercise and a healthy diet is my life now. i am on a daily amitriptyline tablet to combat the neuropathic pain. I was extremely lucky that I did not have a more severe form of neuropathy . It was only pure luck that i kept my ability to walk throughout. Had it been a more severe autoimmune attack , I may not be here today . The lack of basic knowledge by doctors that sudden body wide pins and needles and burning pain , does not represent a medical emergency astounds me. body wide tingling and burning pain followed by muscle pain are classic signs of an autoimmune reaction. my symptoms started less than 24 hours after my vaccine .!!

Has anybody else experienced anything similar?
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