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Hi, I'm LucidDruid! I'm struggling to manage symptoms of Neuralgic Amyotrophy.

LucidDruid

Hello

I am here seeking other peoples experiences and possible advice on living with Neuralgic Amyotrophy. I was diagnosed with NA in 2010 when I was 15 years old; I had my right deltoid which is the most effected side paralysed for a good month or so, I couldn't move it, even people at school at the time said it looked broke, it went blue and I couldn't move it and got to the point where I was crying every night, using heat patches to try and stop it. Time went by I want to say 3 months.. and I go to a specialist (probably the most unprofessional person I have ever encountered in all of my health struggles. He finally gave me the diagnosis of NA gave me a little infomation and then I was then past on from one hospital down to Birmingham QE hospital and I am still an out-patient now. After 10 years I feel like I have got absolutely nowhere. They tell me that my nerves may 'regenerate' themselves after so long so I had numerous nerve conduction studies done and they saw no changes only the effected parts of the Brachial Plexus or the arm pit so I am to believe? My right deltoid is completely wasted, it has been since 2010-11 and in and out of physio which I will admit I did give up on a few times when I was younger but I was even told that physio will not bring my muscle back how true is this? I'm sure there are plenty of variables and each case is different but surely the least I can do is keep the limb moving. In the last 3 years I have lost muscle in both shoulder blades esepcially the left which now severely wings. I am an active person (as much as I can be with this anyway burt I always push myself, I'm not a lazy person and never been scared of hard work lifting etc so when I live this way and continue to get muscle weakness/wastage, pins and needles, tightness stiffness and discomfrot in my shoulders, neck and spine.

Due to my weakness in my neck, I have over the years become accustomed with clicking my neck in order to get some relief from the tightness. I believe this has stretched my lingaments in my neck so I now feel like I have to do this often and to be honest I feel like a 26 year old who shouldnt be in this type of pain for his age, I feel like I have aged sooner, my back and neck are really weak I find it hard to maintain a appetite and motivation in daily tasks like household tasks (when they pain and discomfrot instn too much).. I feel like Im unloading too much in one place but I am so confused and tired with the illness. It used to make me suicidal and made me go to drugs, I'm a much more aware of a person for that to keep happening but I am really struggling with the wastage and lack of quality of life to get a good appetite I stay active yet I always pay the price its like no matter what i do strength training, stretching resistence bands etc just all feels like I'm hurting more.
It cant be for sure but my nurologist told me 3 years ago this coulkd of been caused by a vaccine i had in year 10.

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Comments

janer1967

Hu and welcome

Sorry to hear about what you are going through

I can't help but I know there are other members who have knowledge in this area so hopefully they will be able to help

I just wanted to say welcome

Cher_Alumni

Hi @LucidDruid and a warm welcome to our online community. Thank you for sharing your story with us, it sounds like you have been through a lot with your diagnosis and I can really empathise with how you're feeling. I'm sorry it's been so hard

Neuralgic Amyotrophy is a condition I wasn't previously aware of, and I took a look at this Bone & Joint Journal article which describes it as:

... an uncommon condition characterised by the acute onset of severe pain in the shoulder and arm, followed by weakness and atrophy of the affected muscles, and sensory loss as the pain subsides.

I'm sure you're aware of this, but just to make our other members more-informed too

As we aren't medically trained, we wouldn't be able to offer any reliable input around future treatment (although other members could share their experiences), so I'd recommend revisiting your GP or hospital consultant to discuss your concerns and explore other avenues of therapy. I appreciate this hasn't been particularly helpful in the past, but please do make your healthcare team aware of the broader impact the condition is having on your lifestyle and emotional wellbeing.

I'm glad to hear you've overcome a dark time coping with your Neuralgic amyotrophy and your tiredness/confusion is absolutely understandably. Chronic illness is tough, and it's important to surround yourself by people who 'get it' and our community members most definitely do and are here for you whenever you need us.

I'm going to email you now to discuss if us at Scope can help you in any other way, but please know that we hear you and are sending lots of virtual support.

Also, just to let you know - I've tweaked the title of your thread and moved it to our Neurological conditions category so anyone else with Neuralgic Amyotrophy can spot your post easier and reply. Take care.

chiarieds

Hi @LucidDruid - & welcome to the community. I'm sorry to read about your problems with Neuralgic amyotrophy. The cause of this is often unknown, & as you correctly say, each case is different. Many were thought to spontaneously improve, but now it seems often the majority do not. Physiotherapy would have helped in those cases where improvement was going to occur, which at the time would be unknown, & certainly in those who later proved to show some recovery of the affected muscle(s).

It's good that you have kept active, but it's understandably a bit demoralising when you can see no improvement, & presumably your specialists have been unable to help. The disorder shouldn't affect your appetite, but perhaps living with pain can. As a (long retired) physio with something like this I think it may very well be difficult to strengthen such weakened muscles, & also any movement that causes pain just further increases the cycle of pain so is counter-productive. However, if you haven't had any recent physio, it may well help you in checking your shoulder & scapula movements to minimise shoulder problems, assess posture, etc. An occupational therapist may be useful in assessing activities of daily living (something I was also trained in doing as there were no OTs in our city hospital, but which gave me an understanding as to how much this can help). So perhaps worth asking your GP for such referrals, as I'm sure that anything which may reduce your pain would be welcome.

As the incidence of this makes this disorder fairly rare, you can see case reports of perhaps one individual in whom something like a vaccination could possibly have been a 'trigger'. that seemed to set the disorder off.