Worried about MND

[ElizabethJane]

To itoldyouiwasill: Do you have personal experience of this disease? My mothers first experience of MND was that she had tingling, numbness and pins and needles in her legs. I understand the symptoms of MND more than most and the distress it brings to families. Those were her symptoms. Whether you believe or deny that they were connected to the MND ( I know they were ) is up to you.

[itoldyouiwasill]

To itoldyouiwasill: Do you have personal experience of this disease? My mothers first experience of MND was that she had tingling, numbness and pins and needles in her legs. I understand the symptoms of MND more than most and the distress it brings to families. Those were her symptoms. Whether you believe or deny that they were connected to the MND ( I know they were ) is up to you.

Yes, a close family friend died of Bulbar ALS.

I quote:

"...ALS is differentiated from a root or peripheral nerve lesion by the lack of pain or sensory symptoms. While ALS is a slowly progressive disease, a precipitous event may occur to bring the patient to the ED."

I have no wish to get involved in a huge debate over the signs and symptoms of ALS. The only point I am trying to make is that if somebody has a disease it does not then mean that every physical symptom they experience is attributable to said disease. I think that is a crucial point to make on what is a health anxiety board.

[ElizabethJane]

To itoldyouiwasill: the illness that your friend had might be different from the type that my mum had. She was diagnosed in 1986. Few GPs had seen MND in those days. They did not differentiate the types in those days. Hers was a rapid prgression to complete paralysis of the legs, no speech, unable to swallow, stand or breathe.I believe this was because the motor neurones were unble to process messages from the brain to her muscles and it happened very rapidly over a course of eighteen months. she eventually had a heart attack after choking on her own saliva. It is a very distressing illness but as others have reiterated very very rare.

[itoldyouiwasill]

[quote=ElizabethJane;467726]To itoldyouiwasill: the illness that your friend had might be different from the type that my mum had. She was diagnosed in 1986. Few GPs had seen MND in those days. They did not differentiate the types in those days. Hers was a rapid prgression to complete paralysis of the legs, no speech, unable to swallow, stand or breathe.I believe this was because the motor neurones were unble to process messages from the brain to her muscles and it happened very rapidly over a course of eighteen months. she eventually had a heart attack after choking on her own saliva. It is a very distressing illness but as others have reiterated very very rare.[/quote]

Yes, whilst it is truly dreadful the only comfort is that it is incredibly uncommon.

[justbananas]

The only point I am trying to make is that if somebody has a disease it does not then mean that every physical symptom they experience is attributable to said disease. I think that is a crucial point to make on what is a health anxiety board.

this is very true - what is also worth noting, is that even if various symptoms are attributed to or experienced with a specific disease, it does NOT mean that if you experience that symptom, you have that disease. many symptoms experienced by people with all kinds of illnesses are also benign symptoms in most cases. that is so important to remember for all of us.

[ElizabethJane]

Justbananas I'm not sure what a benign symptom is? One that does no harm? Not attributed to that disease psychosomatic? If I have symptom that I'm worried about then I will get it checked out even if it is a bit extreme. I dont think I have health anxiety in a big way. A few weeks ago I had simple thrush but because I had some intimate bleeding already in my mind I had cancer. Fortunately I spoke to our practice nurse and my friend who is a doctor and some self medication did the trick. However it is easy for these anxieties to get out of hand but also it is important for symptoms of disease not to be ignored and to be properly investigated. It is for us somehow to put our fears in proportion. Who knows I could have an MND timebomb inside me waiting to go off. I have no symptoms however, the only link being that my mother suffered from the disease.

[justbananas]

yes a benign symptom is a harmless one. for example, many people get pins and needles sensations. this is sometimes experienced in those with diabetes and MS for example, but just because you get constant pins and needles does NOT mean you have diabetes or MS. it's always good to get things checked out of course, but sometimes we just experience symptoms that are unexplainable, or due to benign causes, and sometimes they are actual physical manifestations of anxiety. they are not dreamt or imagined, they're actual physical symptoms due to the process of anxiety.

we all have to take it day by day and case by case to accept that, and decide when to get things checked out and when to not get bent out of shape over something that is nothing. it's part of why this forum even is here -we're all searching and striving for that balance. some are lucky enough to have found it already. some of us are getting there. yes there could be many time bombs with anyone and anything -but you just have to do the best you can. the way i see it - is i take care of myself, see doctors as necessary, have faith, relax, try not to be anxious (ha), and also know that yes, some things are genetic for example.. but technology is changing every day, and you can't predict your future, you can only take care of yourself and be optimistic. my dad went through prostate cancer but had surgery and treatment from one of the best doctors in the country who pioneered this new and innovative form of removing the prostate. he is in the clear and healthy now, back to playing tennis every night and lecturing me about applying to grad school. 20 years ago his dad died from it. he didn't have those same opportunities for treatment and healing. things evolve with time, our ability to thrive, our capacity to take the cards we are dealt and make the most of them. in my opinion, we can learn from the past but certainly should not be dictated by it. anything can happen and while we can be prepared for the bad, we should hope for and expect and look forward to the good.

[ElizabethJane]

that is a very good post justbananas I am glad they they found a cure for your dad. As yet there is no cure for MND. There are drugs that can slow its progression but that is about it. Sorry to sound so hopeless. I really prayed at the time that my mums illness would not be terminal and that she would be spared but sadly she was not.