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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-13-2009, 02:16 PM | #41 | |||
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First off. let me say "bravo" to you for going through with this. You have to be really strong in order to keep pushing forward, esp. after all the junk you've been through.
You are truly a fighter! Not everyone who has been through what you have been through would be able to pull it together and keep going. Second, I agree with Becky all the way! Dr's only want to bland details, nothing else. Please do not mention anything about your GP thinking this is in your head - it will not help your case. Just keep to the facts - meds and how you feel after you take them....... Do I ever question my dx? Only every day! I mean, I know (in my head) I have MG, but it is still a shock - even after a year! Even after my thymectomy - it IS hard to admit that I have a so called "incurable" disease - but there is always, always the chance @ lifelong REMISSION! I know it's coming......I believe that every day! You CANNOT FAKE MG! Who on earth would want to? You are sick - not mental! Hang in there! I know it is extremely hard to take, b/c I have BEEN there myself - if it wasn't for God giving me my amazing dr's, Iknow I would not even be here to type this to you.......it does get better! Big, big hugs! Erin Quote:
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Erin . |
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06-13-2009, 03:01 PM | #42 | ||
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Member
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Hi Rach,
I completly agree with Becky and Erin...stick with just the facts. The fact that you are getting relief with Mestinon is very important. Your determination and great attitude are commendable. You have been through more than anyone should ever have to go through in their lifetime. As I've said before, I truly believe you are finally going to get the answers and medical help you need before too long. Just keep hanging in there, it's going to get better. I wish you all the best and will keep you in my thoughts & prayers. Hugs, Pat |
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06-14-2009, 05:59 AM | #43 | ||
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Hi,
I wrote the letter yesterday and have kept it along the lines you have stated. Its unemotional, factual and doesn't mention hospitals or Drs names. I have also spoken to my parents and they are willing to have blood drawn to see if its CMS. I have also mentioned that there is a history of auto immune diseases in the family - pernicious aneamia, alopecia areata, fibromyalgia and M.E. I have put in chronologigical order so I can saw what symptoms happened when and what medication I was on at the time. I read it through to my mum last night and she said its ok. I have a couple of tweeks to make. So it will be sent on Tuesday ( hubby is day off then) by recorded delivery. Thank you again for everyones advice and support. Love Rach x |
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06-14-2009, 12:36 PM | #44 | ||
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Member
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Good for you Rach! Best of luck...we're all here pulling for you! Take care and keep us posted.
Hugs, Pat |
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