Worried it is Parkinsons Plus


#1
I am worried out of my mind. I am 40 and have a 4 year old. But I am not worried about that. He he. My neurologist isn't happy with my walking and right arm swing. When I asked him if he thought it was parkinsons, he said it would be atypical if it was. At first I just thought he meant unlikely because I am young and have no tremor but since googling it I realise that there are a lot worse things to have. MSA for instance. I still have my sense of smell and my stiffness symptoms seemed symmetrical to me although worse on the right side. In October I went a and e and they admitted me for 8 days and did an MRI to check for m.s and a brain tumor. I was discharged and told it was all psychological. Since then my life has changed considerably. I have enormous fatigue. Fluctuating stiffness and weakness and for two months, I didn't see my son as someone else had to care for him, my mum in Surrey, so I didn't see him over Christmas, as I live in Yorkshire. I am concerned that my one a day diet coke habit may have contributed to all of this. I also have suffered previous head trauma and was in intensive care after the birth of my son. Still praying it is fibromyalgia or chronic fatigue. Just need someone to talk to. My husband is worried and so doesn't want to talk.

#2

Hi Minxish

Sorry to hear about your troubles but wecome to the site.  I am sure that it wil be of benefit to you.  I have been diagnosed for twelve months and have mild symptoms but like you the one thing I did notice was the extreme fatique.  But that is not to say that you do indeed do have parkies.  Lots of people out there with a greater understanding of it.  I dont suppose it was helpful to say it was all psychological and leave it at that. Parkinsons is a different journey for each one of us. Not long ago I was posting that my husband buried his head in the sand too.  Not very helpful and I know because I have been married for forty six years but you learn to live with it and come round to accepting that we all have ways of coping with things happening that we do not like.  I think half the time they do not know what to say for the best.  I just try and get him to develop an understanding of the disease so that we can both help one another. But the one thing you read on the site from various people is to try and stay positive.  I think stress can be more destructive than anything.  It certainly makes the fatigue worse.  So, I offer you my best wishes and empathy for how you are feeling at the moment and look forward to further posts from you

Regards

Astoriasiswink

 

 

 

 

 

 

 

 

 

 

 

 

 


#3
Thank you for your kind words. Yes I have been angry at the ways some doctors and family members have just dismissed me as a silly airhead, buy now I have a really good neurologist. This was the fourth time I have seen him. I wanted to be taken seriously. An EMG came back clear. Now I have gone from wanting them to believe me to being scared of the results. Such a prolonged waiting game. It has been 9 months since the start of all of this and I think I may get some antidepressants next week. Don't like the idea really but cant stand to feel again the anxiety that I felt over Christmas. I can feel it building. I am not normally like this but I am freaked out by it all and so ill. Sorry for moaning. Will look at your story.

#4

parkinsons is a funny disease in that a large number of people are atypical, me for example. i had no tremor for years and still have a reasonable sense of smell.

i think there is no evidence that coke causes pd or msa. self-blame is often an early behaviour but pointless.

if it is msa it may not be clear for several years. symmetrical symptoms are a sign of of p+, but only a sign not a certainty.    

good luck

 

 


#5
Thanks for your rational response. I do tend to look at worst case scenario and panic. =(