Hey Susyt,

What strikes me is at 74 you can do "heavy exercise" I don't think many 74 year olds exercise at all or are capable of exercising.

I think its a good idea to have an MRI scan of your brain and spine. I've had them and both negative. The chances of late onset MS for you are negligible given your lack of symptoms.

I think you've hit the nail on the head with respect to your attitude to your symptoms

"I have noticed that when I am otherwise occupied I do not seem to notice it."

If you were able to adopt the attitude that your symptoms were trivial and were dismissive of them, if you chose to ignore them wherever possible and just get on with your life, you could, in a way, set yourself free.

Too often, and I don't mean you at all, people become so preoccupied with their condition that it becomes part of their identity. They become experts in whatever they suffer with and it engulfs them. It takes over their lives.
I appreciate that some people's conditions give them no choice. You only have to read desperate heartbreaking stories on this site. But for many people we have a choice.

To quote John Milton

"The mind is its own place and in itself, can make a Heaven of Hell, a Hell of Heaven."

Anyways, thanks for the update. I hope you will let us know how you get on.

Take care and best wishes,

Atty

Thank you Atty, your comments here and elsewhere are an inspiration and am heartened by your optimism. Will certainly report after i have the MRI which by the am dreading because I get claustrophobic and will need Valium to get me through it.

suzyt,
I hope that the medical tests you're undergoing can shed some light on the cause of your PN, and that they can offer some sort of remedy. My tests all came back negative, with an overall diagnosis of "idiopathic".

Keep moving! Keep meditating! Your best bet is keeping your positive attitude and focusing on the good in your life.

I get claustrophobic in the MRI machines too. The PET and CT are wide bore so I can deal with those. However, because I have so many of them all and because of the distress it causes me I am prescribed a twilight sedation added to the cannula as I get IV contrast. I still get extremely anxious and my BP goes through the roof, but if I didn't have this I would not be able to have any MRIs at all. Not many medical diagnostic facilities do this. They mostly just give patients needing light sedation some type of pill.

It might help to get in touch with your doctor or your GP so that they put "needs sedation" on the referral form. The facility that does give sedation in my area only does it on certain days of the week, so that's something you need to sort out in advance with them.

Of course, if you think you can deal with the 20 mins or so in the machine, then that's even better, but nobody should have to suffer with extreme anxiety.

Let us know how you get on.

.

It has been awhile since I have had the MRI. The outcome was mixed. Firstly they identified that I have some white matter - which could mean that I will develop dementia at some point. My mother did at 90 and my sister has vascular dementia at 81 and sadly has had to go into residential care.because her mobility has been severely compromised with falls and cannot live on her own anymore. I have always thought that with my family history I may be develop dementia as well. The MRI also identified that I have some sort of fungal thing in my sinus - I am having this investigated this week, but my doctor is not concerned - all fixable.

The MRI did not identify any more regarding the neuropathy. So here I am no better off regarding knowing any more about what is causing the neuropathy. It has been 6 months now since the start and the overall body sensations are continuing and are pretty much all over my body. I have to say that they have got worse since I have had to deal with my sister going into residential care, I am having to sell her home to pay for the care costs and also deal with her extreme dislike going into care.

I need to come to terms with my own future and the possibility that I may need care either because of the potential dementia or that the neuropathy will affect my mobility. At the same time, I am keeping up the excercises, yoga and will go back to doing more mediation.

I am really hoping someone will say to me "don't worry about the neuropathic sensations - they may not go away, but they won't affect your mobility going in the future". I know that's not going to happen, so I have to come to terms with it as much as I can.

Also the Neurologist said that with my all body sensations - sensory neuropathy that the brain sometimes misfires and causes this to happen, that sometimes it can be the brain blocking out a traumatic experience. I have been racking my brains to figure if I have had some kind of traumatic experience, but can't. I guess if I could, then the brain wouldn't be blocking it out - catch 22.

I have not made another appointment with the Neurologist as he says he has done all the tests and therefore no further investigation.

I hope someone out there can offer some positive feedback.

SuzyT

Hey SuzyT,

Thanks for the update and for sharing your experiences. The conclusions you have arrived at all seem unnecessarily pessimistic. Your neurologist has spoken speculatively, off the cuff about trauma and that has not been helpful. I've only ever had one telephone appointment with my neurologist. His words forked no lightening.

The only certainty is that your symptoms became worse because of your sister going into residential care. That will be down to stress. That is the key, manage your stress levels, manage your symptoms.

A word about mobility. You have, at worst, mild sensory neuropathy. This affects your sensory nerves. This does not affect motor nerves and therefore will not affect mobility.

I have more to say, but have to go to work soon. So will write again.

Best wishes,

Atty