Bea6407
60 post s
2-Sep-2008
7:27 AM
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I need to vent. I have been having trouble with my memory. I've MG for two years. I thought it was just a side effect of MG. I desided to push it with my Nero. Before this he's just said no its not part of MG and not persued it. I had a brain MRI a few weeks ago. Last week he informed me the MRI was showing some sign's of Brain Athrophy. It's early stage, and he is setting me up with a PET test to find out what is causing it. He then said they have come a long was on things like Alzheimers. The have good meds for memory now. Just the idea is terriffying. My Husband has Post polio syndrom (PPS). It like MG is emotion, affacted. They are trying to keep him going for 5 years so he can work and keep our medical insurance and retire at 66 for full benifits. We bought land to build a small house and retire on 30 miles in the country. But it is only 15 MIN to a major hospital. I always knew I'd end up taking care of him because PPS is such a debilating disease. I haven't told him what the Nero said yet. We are leaving for a once in a life time vacation in three weeks. He is weak and tired, and needs the rest. It will keep until we get back. My husband loves me dearly, it will devistate him. I have fear for myself, fear for him, fear on how we will take care of each other. I greve for the small house I designed, the life we were planning in retirement together. I've always been a private person. After 10 years of marriage, I still shut the bathroom door. And he respects my privicy. I don't think I can face the humiliation of some one changing my diapers. Brain Atrophy is still brain atrophy no matter what the desiease. I will still lose my memory. I need to sign off now. I am finely crying over this and and need get it out of my system. Bea
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rachel73
16 post s
2-Sep-2008
8:43 AM
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Oh Bea,
thats a massive burden to carry alone. Dont worry about the eyes leaking mine were doing it alot yesterday.
I don't know much about what brain atrophy means, but memory problems / mind fog is a symptom of MG. I regularly say the wrong word or can't remember someones name who I have known for 20 years. Prior to the MG I had a photographic memory.Now theres nothing to say that the brain atrophy is going to get worse when you start your medication. It may get it under control and stabilise it. Worrying about it at present isnt going to help either as you can't change the results of any tests. I know its hard but is there any family nearby that you can confide in as I can only offer words and cyber hugs. Keep me up to date with how you are doing. Im reall sorry that I cant be of any more help.
xxxxx
Rach
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dearheart
59 post s
2-Sep-2008
3:04 PM
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dear bea,
try not to worry too much...when i started this carousel with the ophthalmologist she sent me for a scan..she said she wanted to see what exactly the muscles behind my eyes were, or weren't, doing..but when the images were on her desk she didn't like what she saw so she sent them to a neurologist colleague to look at...he told me there were some unidentifiable marks or patches on my brain that weren't MS and might mean nothing at all or might be something...it seems MG is not connected to this.....I discussed it with my GP who said this brain scanning stuff is so new that doctors and radiologists are seeing many things that cannot really be interpreted as mankind does not have enough knowledge about the brain, and that people managed for millennia with un-looked at brains that were probably full of marks etc. I found this very reassuring, and hope you do too.
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Jane77
57 post s
2-Sep-2008
8:35 PM
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Dear Bea, I am so sorry for your news. You must be having a truly terrible time. I don't know if I am speaking out of turn here as I am sure your Neuro is an excellent Dr but I do know that many people are misdiagnosed with MS and brain lesions are shown, when they actually have a B12 deficiency instead. There is a good book written by a Nurse called 'Could it be B12?' - Sally Pacholok is the author. When she was a nurse she saw hundreds of people given the wrong bad news when it was Pernicious Anaemia instead. I have PA myself and I believe PA and MG can be linked. I hope this does not mislead you but I thought I should mention it as I am one that was misdiagnosed for years before diagnosed with low B12. My memory is much better now but I have permanent nerve damage in my feet. Hugs and best wishes ... Jane
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mrloz
57 post s
3-Sep-2008
2:29 AM
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Hi Bea, so sorry to hear this but do try not to despair. Your neuro is absolutely right when he says such good progress is being made now with brain conditions. Drugs are now available which have a dramatic effect and will greatly improve your cerebral processing. There is also lots of research that shows that the more we use our mental faculties the better things become so keep doing the mental arithmetic, checking your change when shopping and so on. One final thing- go away and enjoy that holiday! When you have a firm diagnosis and started treatment I'm sure things won't look so bleak. Good luck to you.
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Laurence in London
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Bea6407
62 post s
4-Sep-2008
3:01 PM
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Thank you to you all. I'll try not to fall a part until I know the cause. I'm hopeing for shadows on thw MRI. But in the meantime I'm going to get some, B-12. I'll try anything. I'm doing OK hiding it from every one for now. I refuse to let it take the air out of our vacation.
Thank you,Bea
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Gail37
23 post s
4-Sep-2008
4:27 PM
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Bea, I wanted to cry when I read your post and the burden of trying to protect those around you as well as your own panic for yourself. I too want to encourage you to not panic before you have more information. I have had about four MRI's trying to find out why I've had double vision for over five years. The very first MRI showed shadows and I will quote my report "FINDINGS: There are small subcortical white matter hyperintensity foci in both cerebral hemispheres. This includes the left optic radiation. There are also a few punctate non-enhancing foci in the central pontine tegmentum. Despite her age, there is no evidence of cortical atrophy or cerebral atrophy." My first neuro was concerned but they have found no evidence in all my MRI's that anything is progressing or even why there are lesions there. My present neurologist looked at the MRI's and discounted them as a worry and has diagnosed me with MG and is unconcerned about the report. When I read your posting, I immediately remembered MY panic when the neuro mentioned the shadows and my horror at anything being wrong in my brain. Don't jump to a conclusion until you know what is really going on. I too, like you, will get vitamin B12... just in case. I will be thinking of you and hoping you will be able to let it go for now and enjoy your holiday of a lifetime and make it one to remember. Don't give up on those dreams. Gail
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