Karen
6 post s
3-Jul-2008
1:16 PM
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Hi I have had MG for about four years now, i had a thymectomy almost three years ago, i see my Neuro every six months, today at the app i mentioned how very tired i feel a lot of the time, its hard to explain i feel like somebody has drained me of all my energy almost a light headed feeling, but not a tiredness like i need to sleep. He said this is not commom of MG, but it something i have experienced since having MG. At times everything i do takes a huge effort, does anybody else feel this way?....also another strange thing i have found is sometimes when i pick up a book to read on a night my fingers feel strange holding it, as if i cant grip it, its a weird sensation. Karenx
Last Edited on 3-Jul-2008 1:20 PM
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arice85
54 post s
3-Jul-2008
5:46 PM
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All this sounds very common to MG in my experience/ opinion.
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redtail
70 post s
3-Jul-2008
7:17 PM
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Hi Karen yep this sounds normal for me, and I have a constant battle with my neuro as to MY understanding of muscle fatigue and "tiredness". When I was first diagnosed it wasn't unusual for me to sleep for 12 hours straight. Now Im like you tired but not sleepy.
I think I finally got my message across when I visited him a few months ago, and he had a couple of interns with him. He said to them I always had a problem distinguishing between the two( I didn't he just thought I did) but after I put my foot down and explained it fully using easy to understand examples, he somewhat changed his mind. it will be interesting what he has to say the next time I see him hope this is of some help
take care
redtail
---------- "downunder" western australia
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BRQQK75
51 post s
7-Jul-2008
10:04 PM
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Karen, last year, our daughter who was 21 at the time also had a thymectomy 4 months after diagnosis of MG... she is now either in remission or going into it..she hasn't taken any meds for about 3 months now... did you have any remission since the thymectomy? ... are you taking any meds for your symptoms? I'm just wondering what we should expect in the future... I hope this post finds you with more strength and feeling better.
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Karen
10 post s
8-Jul-2008
5:05 AM
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Since having the thymectomy, i havent reduced my 420mg mestinon, some days i can take one less, i know when i need one as my symptoms start to appear, what i would say is i think the symptoms are not as severe as they were before and the medication seems to work better, so i would say there has been an improvement, i def made the right choice in having the thymectomy.
Hope your daughter continues to improve.
Best wishes
Karen
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BRQQK75
52 post s
8-Jul-2008
7:14 AM
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Thank you Karen for the info and good wishes for our daughter. We agree with you regarding the thymectomy. We were excited that there was something which might help our child and relieved to have it DONE! Last year at this time, things were much different and since the thymectomy... the symptoms lessened! I know it takes awhile for the surgery to sometimes "kick in"... they say it might take years...I'm hoping you will continue to improve and experience good health and strength! After your thymectomy, did have a feeling that there was a sort of "empty feeling" in your chest? Also, did you feel that your emotions were numbed for awhile? Those were two things that my daughter talked about. Her emotions seemed "on hold" for a few months.. she said she didn't feel any highs or lows... she was stuck on neutral. A few months ago, she told me..."Mom, I got mad today!" She felt like her emotions returned. I was thinking she might have been suffering from a sort of traumatic stress due to everything that happened to her in such a short time...especially after being very healthy all of her life, until the MG diagnosis... she had never been in a hospital much less had surgery. Anyway, just wondering if you had any of that also. Hugs,
Lin
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annawaliszewska
61 post s
8-Jul-2008
8:56 AM
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Karen, maybe my 2 cents could help. I was with my daughter at many neuro appointments. At the very first after hearing her story the neuro said: so… you are tired all the time. My daughter answered: no I am not tired, I am weak. I know when I am tired, but what I feel all the time is weakness. He understood :)
Best wishes for you.
@nn@
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fran60
148 post s
18-Jul-2008
6:41 PM
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Hi Brooke,
I know just what your daughter is talking about. After my thymectomy September 2007. I felt like I was in a trance. I think it was a very traumatic experience to go through. My emotions also left me. Only now am I starting to feel a little like myself again. Sometimes I think it was all the medication I was on. I am on a very little dose of prednisone and mestinon and I am starting to feel better. Thank God your daughter is doing well. Fran
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fran60
149 post s
18-Jul-2008
6:49 PM
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Hi Karen,
I also, agree with Anna. The word is weak not tired. I myself took a year finally to distinguish when I am weak and when I am tired. I was so wrapped up in the MG condition and the medications that I was not thinking straight. Since I am feeling better now I have been taking one day at a time to learn how my body reacts to the medication and to my activities. I can finally say I am starting to understand MG. I had my Thymectomy in September 2007 I was informed it may take up to a year or more to see results from the surgery. I am not sorry I went for the surgery because I am feeling stronger the past 2 weeks so I may be getting results. I hope you will be seeing the positive results soon and you will start to feel stronger. Blessings to you. Fran
Last Edited on 18-Jul-2008 6:54 PM
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BRQQK75
54 post s
19-Jul-2008
8:11 PM
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Frani.... thank you for sharing your experience regarding (lack of) emotions after thymectomy....I passed along your message to my daughter... she felt good knowing she was not the only one who had the experience of being emotionally "drained" for awhile. It's not something I have heard others post about after thymectomy and we too thought it was due to all the trauma of going thru a diagnosis after being completely healthy all her life. Keep on getting better and stronger!!! You know I keep tabs on you here by your posts and always wish you the best! Lin
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annawaliszewska
62 post s
21-Jul-2008
11:12 AM
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Dear Fran, I soooo happy you are better. Keep fighting.
@nn@
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Karen
12 post s
22-Jul-2008
5:14 AM
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When i say im tired, i dont mean weak, sometimes my arms are weak or my eyes as i cant hold one of them open it droops, but at times i can be ok with them but feel completley worn out.
Karenx
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