New diagnosis for an apparent "old" condition

I am not currently on any medication but was first diagnosed in 1973/4 when there was no MRI scan available.  I suffered periodically with spasms and numbness in arms and legs for the next 7 years  being given ACTH injections! which is no longer used  but from 1981 until March of this year was I fell in remission with only a weakness in my legs and mobility but which I put down to a problem back! In March I suffered what I now know to be a relapse and was admitted to hospital and  given an eye examination by the Consultant Optician for sight difficulty ( which soon resolved) and an MRI scan and the Neurologist confirmed a lesion on my brain and a definite diagnosis at last. We discussed possible treatments and he felt that following the large infusion of methyl prednisolone   and the unlikelihood of  any other further treatments being effective  I would be discharged and just see him periodically.

My mobilty has not improved and I always need the support of a walking stick  when not in the supermarket. A supermarket trolley when shopping is I find the best support and makes me feel as though I am walking normally! In the home I use the furniture for support much of the time.

My greatest frustration is my decreased mobility and lack of confidence. I thankfully am still driving (I did of course have to  inform the DVLA but got my licence back)and I have an automatic hybrid Honda Jazz. which helps. I can use the local buses of course but at least the car gives me a great deal of independence and I do have a private Home help for 2 hours a week and she is  a wonderful person who can turn her hand to anything!  Following my hospital discharge I did have two periods of short stay in residential homes but  oh dear-as an ex social worker it makes me determined to remain in my own home for as long as possible!

Penny

@Penny1946 Hello Penny,

Thank you so much for sharing your story, I have to admit, I smiled a little at your description of finding the shopping trolley the best support :) I wonder have other members experienced something similar?

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I find that for me fatigue is the worst. I have had to go down to part-time work as I am unable to cope with full time. They say don't get stressed but life doesn't work like that. I have a dad we have had to put in a care home and are currently clearing out his house to sell. By no means is this easy and all the paperwork that you have to do to change addresses for him. No-one makes anything easy. My husband is also not in good health and I have had a relapse which meant that my skin felt like it was burning from top to bottom. I do have mobility issues as I have pain in my knees and hips. I can drive but not for long distances and have my license renewed every 3 years.

I am only 44 but feel frustrated that I can do less than a person who is 60. I know it is not going to get any better but we can all hope of that miracle cure one day.

Amanda

@smegcat Hi Amanda, thank you for sharinh. I am sorry to hear about your issues, it is never easy dealing with severe health issues on top of the other challenges that life can throw at us. 

My new diagnosis was for schizophrenia and executive dysfunction. A type of brain damage. I have been schizophrenic for a no of years but refused point blank to tell nurses anything that happened to me. So I been put down as having psychotic episodes which I do but I’m a schizophrenic they’re not the episodes just because I’m depressed. I was finally diagnosed two years ago when I became very unwell physically and mentally and I nearly died. My oxygen level in my blood was 24 percent and my organs were failing and I was ventilated. All due to a blood clot and sleep apnea. At that time in the psych ward was an excellent consultant who was like a dog with a bone until she had managed to draw everything out of me all my symptoms the reason I have a mental health issue the lot. Maybe @JosephineO‍ one day we can discuss the importance of having a good dr. 

Im happy to report that my brain damage is improving and I get to my old self more every day excercise lots of support caring friends and relatives help a lot. But at the end of the day I believe that you’re the only person who makes that choice to fight these things yourself. I have lost 2.2 stone this year and it’s improved both my mental and physical health 

@Daisydef Getting fit can have such a great impact, I have been walking more lately and it has been helping...even if I don't like going out in the cold and wear many layers.

Having a good doctor is priceless concerning medical care...it can be a lot of trial and error until you find the perfect one for you. 

@Pleasance‍  without doubt drs play a big part in things. I'm struggling at the moment in the community are endless consultants locums being replaced monthly or even weekly at times.