I hope you’re all well and up to date with all your Christmas preparations.
I’ve had a rough couple of weeks, first feeling really down in the dumps but I don’t know why, fatigue has hit really hard and my balance etc has all gone haywire. I’m picking up now, not looking for sympathy, but I can now imagine how people feel when they relapse though I’m sure it will be a lot worse and last longer.
One big concern I had was my vision, it’s always blurred then I get double vision when I’m tired but it was like that for a lot of the day and at times they itch but at others they poured, tears running down my cheeks though I wasn’t crying. Very upsetting for my family and friends who don’t believe me. I phoned my nurse, sent me to the GP to make sure I don’t have infection and made me an appointment with the Neuro for next week.
The GP asked about my symptoms etc, checked my eyes and then asked me if I thought I had Dementia. I was gobsmacked, what kind of question is that to ask a 44 year old MS sufferer? Have any of you been asked that or am I being over sensitive? Yes I have cognitive issues, my memory isn’t great and I can’t find words, do some stupid things but I don’t think I’m senile. I manage with a diary, calender and numerous notebooks but the way he asked me I honestly started to wonder if he was going to send me out in a very well upholstered van and extra long sleeved jacket. I very nearly hit him.
So, what I’d like to know is: Who of you feel that you’re senile and could have the Dementia label added to your list of problems? Maybe he worded it wrong (I truly hope so) but I also would appreciate it, from my post, whether you think I don’t make sense and am losing the plot.
I only wanted him to check my eyes, and I don’t have an infection but my eyes are drying out then trying to over compensate producing lots of tears, so he’s given me a lubricant which is effective.
Sorry for the long post but I felt I needed to explain. I’d appreciate any feedback please! Take care.
As mentioned on the other post, sending it twice wasn’t me going senile, the post just wouldn’t go through and the box went from orange to white so I hit it again.
I completely understand about temporarily losing words etc. and it’s enough to make you feel like you’re going mad but I know from just chit-chatting on here that you’re not losing it.
The eye thing is annoying and I can understand why that’d bother you - I can safely say that the bloomin’ meds (Baclofen!) make me yawn so hard that tears will run down my face… I think my neuro thought I was exagerating (sp?) about that but truly, that’s what happens! See, and just that I lose my thread and start rambling.
Seriously, maybe your GP has a few problems - go and see an optician, you might find that more helpful than a GP (well, certainly that GP!)
I don’t know what else to say sweetie but you know we’re here if you need us. I’d be so angry if a doctor said that to me
Oh Cath I could punch that doctor for you! Do you know your own name? Do you know who the prime minister is? Do you know who is on the throne? Yes? Then No you are not senile… and don’t worry if you had to think a bit to get the answers, that’s just normal MS cog fog!!! The doctor is a jerk and should know better. Cognitive problems are normal in MS but it is not dementia. In dementia the brain cells are dying off. In MS the messages in the brain are having to be re-routed to avoid lesions, which means that sometimes recall can take longer or there are lapses in memory. I’m so sorry to hear you are having such a hard time darling. It’s quite possible that it’s Christmas that’s causing it. I find Xmas so hard that I have chosen to spend it on my own this year… No don’t feel sorry for me. I’ve had loads of invitations but I know how ill it all makes me so prefer to spend it in dressing-gown, on recliner, watching telly and eating choc’s! It is a very stressful time of year and we try to do it like we used to before MS and it’s just not possible. When your eyes start crying, do you feel like you are crying? Ther is an MS condition, forget what it’s called, where you start laughing or crying uncontrollably. I got the laughing one befor I was dx… Was horrid… Doubled over with laughter and couldn’t stop but in my brain I was in total panic and people looking at me like I was mad. If you don’t feel like you are crying then it is some physical symptom causing it, and hope it can be sorted. Chance are, like so much with MS, it will just stop on its own. Now darling think carefully about everything that is stressing you out right now, and see if there are ways to lower the stress levels. As I’ve said before regarding Xmas, excitement acts like stress with MS. So keep that in mind. Horrid I know as we love getting excited, but your bad elf does not like it… so please remember that. As for your friends not believing you… well people can be so hard on us sometimes… Even people we love and who love us. Always remember that your MS family on here know exactly how hard it is and are here to support you all the way. Huge (((((((((((((((((((HUGS))))))))))))))))))))) sweetheart. Love Pat xxxx
Rereading your post… my memory is so bad I forget the post when I’m typing the bloody answer… I see you do not feel like you are crying… So therefore Cath it’s a physical thing… Do as Sonia suggests and see optician. Have you an MS nurse? If so,contact her and ask advice. Pat xxx
Thank you so much both of you. I’d hug you both right now if I could. I’d contacted my nurse as my vision was blurred and every now and then my eyes would water with tears running down my cheeks though I wasn’t crying. My family thought I was crying though and were worried about me. My nurse booked me an appointment with the Neuro for Tuesday but wanted me to see gp to make sure I hadn’t an infection, which I didn’t. Thanks again for the reassurance.
Cath, I’m so sorry …NO WAY ARE YOUR PROBLEMS DEMENTIA. Stupid doctor …what a thing to say! My cognitive problems are pretty bad but neuro told me …as Pat said …it is definitely not dementia. I was prescribed a tablet called…just have to go and look at the packet …hang on!! DONEPEZIL HYDROCHLORIDE . They are really really fantastic…had to have a break from them a while back and I was reduced to a lump of unrecognizable jelly without them.Istill have all the normal forgetting words and needing to write every thing down etc…can’t recall what I had to eat yesterday etc. My family were very worried when I had a break from them but within a couple of days if going back on them they said the difference was amazing Maybe worth mentioning to your neuro when you go. I know it’s easy to say but try not to worry too much as it will only make matters worse. I had noticed that you hadn’t posted quite so much this week and last…now I know why…don’t forget we are all here for you and we really do want to support you. BTW all your posts sound very very clear and sane to me…I always enjoy reading them. Take care of yourself and keep your chin up . Love Nina xxx
So sorry Cath…not for a moment am I suggesting you’re a lump of jelly!! Just trying to stress how good they are and how much they would help if you are really worried. :-)) Nina xx
Cath; I believe that those that struggle for words tend to be highly intelligent people who just know so many way to put/phrase things that answering even a mundane question ends up becoming an agony of choice.
So struggling for words is a sign of one thing only: intelligence.
You’re all lovely and I can’t thank you enough. I tried to explain what had happened to my family but as they don’t understand how sometimes we perceive our symptoms being worse, and can often take stupid insensitive remarks like that to heart, they didn’t understand just how unsettled I was. They thought it was funny and although part of me can see the funny side, most of me is constantly jumping between upset, insecure and angry.
I’ve had dealings with him before and told him that his inter-personal skills needed attention after I’d gone to see him about nerve pain and all he could do was tell me I was depressed. I have a spinal cord injury at mid neck region, I suffer severe nerve pain and it causes lack of sleep, concentration issues, loss of appetite etc which are signs of depression granted, but that wasn’t my problem at the time. He had his check list out and all I got was “that’s a three then” and at the end he told me I was a safety risk to both me and my daughter.
I don’t have faith in him and usually see his senior partner but I stupidly trusted him to just examine my eyes for infection. Silly me… Anyway I see my wonderful Neuro next week and I’ll definitely have a word with him. Thanks again for your kind words. I know my brain doesn’t work like it used to but I don’t need being treated like I’m senile, he may be a doctor but he’s not long out of medical school and has a lot to learn. I may only have been a nurse but I’ve got loads more experience, especially in people skills.
I do wonder now if he felt he was talking to me as a medical professional, not a vulnerable patient. Maybe I’m too sensitive, never mind, things can only get better for me.I appreciate your comments and support, you understand like no one else does.
