New tests

[lottiejemma]

Hi all,-- Me again , I have just sent a message, but I think I have put it into the wrong place,----- I am feeling stressed at the thought of going for my MRI and CT scans next Wednesday--- it is all the wait for results , same with all the Blood tests that have been done. Also, I feel a bit concerned that my memory is not as good, I easily forget things and names, and cant remember-- also this Isolation that I keep myself in, I even find it hard now to phone people I Know I should be phoning, and I do not want to go out, and dread any visitors, it is not NORMAL, can anyone identify with me ? thank you and GOD Bless all with Ataxia

[Veteran250]

Lottie my lovely, if you have names and other things to remember, write them down on a sheet of paper, in a seperate box on the same sheet of paper write any questions that you may want to ask.

I know its easier said than done, but please try not to have any negative thoughts about the scans, especially as you havent had them yet, the less stress you have, the better!

I wish for you all of the good news that you would like to hear,

😀🌞😘🌹 Xx

[Legs-alive]

I hear you, I hear every word your saying that it could so easily be me saying all this.

A lot of the forgetful I suffer is from a lot of medication I take but you could talk to your gp or your neurologist about having a memory test done, it takes about 10 minutes & it’s just questions so nothing to worry about.

After 9 years of tests last year I finally decided enough was enough it was making me so ill with the stress that I told them I wasn’t having anymore done & was giving Sheffield ataxia centre a break for a while. The constant stress & worry was just too much for me to cope with. The tests don’t normally take too long to come back & your specialist should write to you with the results.

I too no longer really go out or socialise any more & often lock my doors pretending to be out so I don’t have to see ppl, but it’s not really good for you because then it starts to happen more & more often, I’d advise again speaking to your gp about how you’re feeling as you could be suffering with depression- which often goes hand in hand with long term/chronic illnesses.

Let us all know how you get on.

[Sablelodge in reply to Legs-alive]

Yup - it is really tough - here for sure - You in a great Country - lots of support around the corner - we here have zip

[ddmagee1]

Good to hear from you again!! I don't think you sent the message to the wrong place. We got it, and, my, how I can relate to what you have to say! The first time I went for an MRI scan, I was feeling like you were explaining. Now, I've had so many over the years, and they've become more sophisticated, so I don't worry about them, or the CAT scans, anymore.,Concern about the results, is one thing, but worrying about it, to the point where it makes you sick, isn't good for your well being, and is counter productive, in my opinion. When I'm worrying to much, and overstressed, that's when I tend to forget things. Making a to-do list, in the notes, app., on my smart phone, helps me to keep track of appointments, names, phone numbers, grocery lists, etc. I, also, many times, DREAD, having visitors, going out socially, and phoning people, at times. This is called apathy. In my case, as I have mentioned before, in addition to being diagnosed with Ataxia, I've been diagnosed with Parkinson's Disease. As a person who worked in a very public, socially active field, for me to be "plagued" with apathy, is a complete reversal of my personality type. Many people with Parkinson's have problems with apathy. I have a hard time dealing with it. With you, however, you are concerned about the results of your scans and blood tests, so, once that's done, and you find out the results, and know what you are dealing with, along with a treatment plan that may help you, then those feelings of not wanting to phone, or go out, or dreading visitors, and forgetting things, may go away, or get a lot better. Time will tell. Good luck, and I hope it all works out for you. Keep us informed, once you get more information, and we will cross the next bridge, with you, to support you, lottiejemma, going forward! 😁

[lottiejemma in reply to ddmagee1]

Hi, with a BIG Thank you my friend, I have had scans before, it is not the FEAR of them, or the Diagnosis , sorry I don't explain myself very well at times --- 1990 I had my first MRI scan, and the Neurologist then said I had Parkinson's disease , I was put on Sinemet, them Madopar , at that time my shakes were so severe, and I could not stand without shaking and falling, Then I had a test Xray thing done, and behold --I have osteoporosis, that was 8 years ago, because I was always falling and fractures happened every time, but before that, I had other scans, as the Neurologist tried to explain to me and my disabled husband, who had had 2 strokes, ( Both our understanding was poor ) that I did not have Parkinson's, but an essential Tremor !!!!! what ever that meant ???, but my Tremors carried on regardless---- The last 4 years , with medication, the shaking hand is not bad at all, BUT, -- my Balance and walking tripping, swollen feet, went to the doctor G P, I have peripheral Neuropathy !!! FINE, well that explains my problem ??? Then--" as time goes by" My legs ,feet and arms and hands became number , can't walk, just a wee bit with my walker, any length, my daughter takes me out in my wheel chair, taken to see G P again, weeks ago, and she tested my reflexes -- no feeling !!! so an emergency appointment was made to see a Neurologist , and would you believe ?? It was the same one I had before, she was NOT surprised at all to see me, or the state I was in, she gave me all the tests--- finger to nose, eye movements, Reflexes, trying to Balance , watched me take a few steps etc.etc. etc, !!!! it is your ATAXIA she said, and I think it is best that you get around in a wheelchair now !!! well, I can't remember her mentioning Ataxia before, but it seems like I should have known --- anyway, she has put me in for an M R I and Scat Scan, and put in for me to have Physio right away, Neurologist also wanted me into hospital for a week to do more intensive tests ???? I asked her, would it make any difference to my diagnoses ? she said Probably NOT, so I said I did not want to go into hospital ,so here I am !!! I hate the thought of going through all those Scans AGAIN---What for ???, plus all the bloods she took from me, HAHAHA, The blood bank won't be short of blood now !!!! Oh Well Hey Ho, on we Go !! thanks for listening again, and for your concern and sharing advice ddmagee1, GOD Bless.

[ddmagee1]

Thanks for clarifying! Yeah, I understand. I have the peripheral neuropathy, and numbness, somewhat, in hands and feet. It's not easy to have both diagnoses of Ataxia, and Parkinson's, and to feel like your being tossed around, so to speak. I've had my blood analyzed a lot, too. It gets aggravating, having all the tests etc. I am still able to get around reasonably well, but fall, occasionally. I sure can relate, and it's good that we can share our experiences. God Bless!