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Autoimmune Neuropathy - My story of delay after delay in diagnosis .

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Old 09-18-2019, 07:11 AM   #1
djl87
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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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Old 09-18-2019, 06:09 PM   #2
djl87
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Default Does anybody have any idea what exact kind of neuropathy I have had?

The Emg and NCS I received was extremely thorough and detailed. The neurophysiologist spent over 90 minutes conducting his tests . He concluded in his report that " his nerve conduction shows a low amplitude left superficial peroneal sensory response. the response in right leg was absent.other sensory and motor responses were normal. His sympathetic skin response shows low amplitude responses in both feet. after soaking in water he did not have any wrinkling of the skin. EMG shows chronic neurogenic changes in deltoid , EDC, FDI, Vastus laterals, Tib anterior and gastrocnemius. biceps demonstrated low amplitude and short duration motor units , with no spontaneous activity ".

Now the diagnosis as mentioned was a small fibre / sympathetic nerve and motor neuropathy with an estimation of up to 2 years for full nerve recovery . an autoimmune reaction to my hep B vaccine.. the neurophysiologist said it was almost Guillain Barre but not quite. in fact he said 95% like guillain barre. Is there a name for the type of neuropathy i had? a subtype of GBS ? I guess some kind of sensory and motor autoimmune neuropathy .. I know having a name to it will not make what happened to me any different , but i was just curious ...
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Old 09-21-2019, 10:31 PM   #3
djl87
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Default Help! advice please !

Hey Guys .. after the delayed diagnosis of the autoimmune neuropathy reaction to my vaccine, the symptoms vastly improved over the following 3 months. June, July , August.. Muscle mass and bulk had returned slowly but surely in response to exercise (muscles became bigger), and muscle twitching and pain greatly reduced to negligible amounts. However In August 2019 , I did a small skin surgery to remove 3 moles. as a result in that I was advised not to exercise and keep the skin dry indoors for around 4 weeks. By the end of august i noticed my symptoms coming back slightly. some muscle nerve and pain and muscle twitching.... this has continued into middle of september.. I am nowhere as bad as I was at late winter /early spring , but it indeed seems like a small relapse. I am assuming it is because I suddenly became inactive for a month . The anxiety and worry is returning again ! Although I know i need to remain positive.. The neurologists told me nerve recovery could take up to 2 years.. I guess small episodes and relapses should be expected.. i am only in Month 9 since onset of symptoms.

What do you guys suggest ? I guess I really need to be persistent with the exercise again now and no lazy days. Healthy diet and lots of fruits and vegetables ..... anything else I should be doing ? Should be I be on a daily vitamin Supplement?

Many Thanks
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Old 09-21-2019, 11:14 PM   #4
djl87
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Default Quick summary....

Just to summarise my condition :

December 29 2018: received Hep B booster Vaccine

December 30 - Onset of tingling in legs..

January : Tingling Spreads round the body accompanied By Arm pain and burning legs .... End of January Tingling stops but arm pain continues..

Feb until Early May = arm and leg muscle tightness and pain increases. Twitching of eye and face spread around body.... Notice left and right arm decreasing in size... both legs also becoming softer. left side atrophy greater than right side. some problems when sleeping, upper back very tight , breathing little difficult.

End of May : finally have correct diagnosis ... Emg and NCS revealed small fibre/ sympathetic /motor neuropathy . very similar to GBS . advised up to 2 years for full nerve repair....

JUNE/july / august : symptoms improving dramatically. twitching decreased / pain decreased / no breathing issues / muscles getting bigger in response to exercise and lifting weights ......

Mid August - Present : had small skin surgery and became inactive for one month.... muscle pain and twitching returning , along with my anxiety and worry .... i think the inactivity caused this small relapse .......

Just want general advice on what i should be doing.... regular exercise/ healthy diet and vitamins / no smoking/no alcohol / anything else ??? sorry i write so much .. its just i was fobbed off so much for the first 4 months by doctors and this has all caused a lot of anxiety and mild depression .....

any tips greatly received .. Many Thanks to you all..
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Old 09-22-2019, 03:13 PM   #5
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Default Hi dj187

My small fiber neuropathy is idiopathic. I do not have much to offer other then what you are already doing. Diet to not further aggregate your nervous system and exercise to help rebuild those muscles are excellent things to do.

I am sad that this forum has so little participation. Years past, when I needed it, there were people who would respond quickly even if to just make me feel welcomed. When I looked there were 141 people who did read your story. I would guess the reason they didn’t respond was they didn’t have the same situation.

I am happy for you that you are on the road back. Many of us haven’t been that lucky. All the neurologists I’ve seen wanted to treat the symptoms when they couldn’t find the cause.

I wish you a speedy full recovery and hope you get some responses soon.
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Old 09-23-2019, 04:09 AM   #6
Burnsie
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Default

there are very active facebook groups out there with 1000s of members.

that will be another good place to gain advice/support

there is also a UK specific one
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Old 09-23-2019, 07:13 AM   #7
glenntaj
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My Mood: Autoimmune Neuropathy - My story of delay after delay in diagnosis .
Default I would argue, though--

--that the Facebook groups generally don't have the depth of knowledge that this site has in its database, nor the number of well-informed people.

There seem to be a lot of people on them peddling whatever cure-du-jour has recently been publicized; at the best those have limited success for some people in some circumstances, at worst they are snake oil.

I do agree that social media has absolutely cut down on the activity here at Neurotalk, but this is still a better place to come for analytic commentary and educated suggestions.
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Old 10-01-2019, 08:21 PM   #8
djl87
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Default immunoglobulin

Guys as you have read I was diagnosed late .... In the UK on NHS they would only give you immunoglobulin if you were " off your feet ".... my neurologist told me I would just have to get on with it.. recovery 2 years... lots of exercise and healthy diet.... especially a lot of folic acid and B12.... Now the 2 year recovery ... nerves do not repair fast and I still have bouts of symptoms sometimes .... the large fibre motor nerves repair very slowly ..... Now my question is would immunoglobulin still help now ... even though the worst is over.... would it at least help reduce the recovery ... ? as I said I still have episodes of symptoms although nowhere near as bad as the initial attack in jan feb early march... I am only in Month 5 of the 2 year recovery ... It is not nice.. ups and downs..
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