Motor Neurone Disease

[KatieD]

I really don't know which way to turn, I feel like I am dying and no one will listen! Admittedly I do get over anxious about my health, this due to 3 very close family members dying suddenly, but I feel that my GP is trivialising my symptoms as 'nothing to worry about' when obviously I AM worried about them.

Basically, I am tired all of the time, not just a tired feeling but a physical I can't keep my eyes open tired! I am dizzy most of the day! I get muscle twitches all over my body and now have started with difficulty swallowing, food will go down as far as my adams apple( this is not every meal but most), it will sit there and I can literally cough it back (sorry gross I know). Constant aching of my breastbone, chest and breasts (which causes me more panic as I keep thinking it's my heart), central back pain. I don't have any weakness in my arms or legs but after just a bit of activity they ache like I have run a marathon and are painful to touch. No weight loss, no muscle wastage that I can see but I am convinced that I have motor neurone disease! I am a qualified nurse and I wholeheartedly believe I have it!

My GP just laughs and says it's all down to acid reflux!!!!! A close friend also mentioned Chronic Fatigue Syndrome with associated Fybromyalgia, as it mirrors alot of the symptoms. I am so anxious that something is being missed by my Doctor that it's affecting my day to day life! Every pain and twinge and cough I go into a panic (which I know is not helping the situation whatsoever). I've started not wanting to go far from home how 'in case' I feel dizzy or my chest or throat are tight and I can't breathe - I'm 38 and it's not life it's a prison - does anyone else have the same fears or symptoms from these fears?

[ElizabethJane]

I'm not sure sure how to answer your post as I am not medically trained. Has anyone given you a diagnosis of anxiety? My own dear Mother died from MND in 1988. Your symptoms are not the same as someone suffering from MND. My mum did suffer from twitching and tingling in her legs but her legs would give way without warning. When she lost the ability to speak she was also unable to swallow. If she tried to eat lumps as you describe she choked. This was because the messages to the brain were lost. The connections in the muscles from the 'nerones' had gone. Her illness was not associated with dizziness or extreme tiredness or aching limbs. No doubt as a nurse you might have come across a patient who has had MND? I am more likely to get the disease than you as I have a very close family member who has had it. It is also incredibly rare. If I were you I would try to see another doctor in the practice and try to address the fibromyalgia/anxiety. Talk to them about your fears. If you are still unhappy then I would try to set up an appointment with a private consultant to get to the bottom of your problems. It really doesn't sound like MND to me. Take care EJ.

[KatieD]

Thank You EJ, So sorry to read about your Mum passing on. I think that it my main problem the lady I saw with MND had some of the symptoms I have been experiencing and deteriorated rapidly, whereas I have been having these symptoms for nearly 7 years and they have only recently, in my eyes, started to get worse, which again I have to concede if it was indeed MND I would not be here or have deteriorated remarkably by now. If I am honest I think it's the symptoms coupled with the fact that I have lost 3 people with things that weren't diagnosed until it was too late and the anxiety of this happening to me (having 3 small children) is worrying me. Thank you for your concern and your post :) K

[ElizabethJane]

Katie as I said before I am not a doctor and doctors get patient diagnosis wrong. I would try to find someone who is understanding to try to help you with your problems. You are right my Mothers illness was very rapid about eighteen months from start to finish notoriously difficult to diagnose. I know someone whose MND has had a much slower progression and also there is Professor Stephen Hawking in Cambridge who illness has been much slower. My Mum needed to use a wheelchair about six months after diagnosis and towards the end could not stand or feed herself. I also had this problem with swallowing soon after she died. It was put down to anxiety. EJ.