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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Does this sound familiar? (https://www.neurotalk.org/myasthenia-gravis/88011-sound-familiar.html)

erinhermes 06-13-2009 02:16 PM
Hi Rach!
 
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.:D

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:D







Quote:
Originally Posted by rach73 (Post 522825)
Hi all,

I just thought I would give you an update on whats happening.

Mood wise Im very up and down. This has been due to the fact that my very caring neurologist isnt seeing me until the end of August. I also had a call from my gp's surgery to say that he wanted me to go in and see him, they demanded I made an appointment there and then. I told them I couldn't as I needed to know my husbands schedule, as I couldn't get to the surgery alone. This was scoffed at. Silly me obviously as the Drs secretary you have a degree in medicine, I apologise for my ignorance!

My GP is basically going to sit there and crow because since the disasterous visit to Oxford he believes that alot of my illness is phsycological. Thank you Oxford.

Today I have managed to down load the video onto my pc and then onto a disc and I will be sending it to the Weatherall Institute of Molecular Medicine, where Angela Vincent does her research.

Im asking for some advice here, I know I need to remain neutral in my covering letter. Should I give her a history of my symptoms ? Should I include my neurologists name and address along with my GP's? What do you all think?

Also does anyone else suffer with extreme self doubt when it comes to their illness? As you know I did the heel walking test last night, then today I question its results by telling myself I knew what the outcome would be so I put it on. I know this is crazy talk, but I dont believe myself sometimes....does anyone else have this?

Im taking the mestinon when my eye is closed and it opens after an hour. Im also taking it when I have bad muscle weakness. I have to take propantheline with it as I suffer really badly with side effects, horrific stomach aches which remind me of when I had bowel adhesions. I also get the runs, sorry I can't spell the D word!

I look forward to your responses and Im looking forward to a brighter future.
:D

Rach

Pat 110 06-13-2009 03:01 PM
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

rach73 06-14-2009 05:59 AM
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:D

Pat 110 06-14-2009 12:36 PM
Good for you Rach!:D Best of luck...we're all here pulling for you!;) Take care and keep us posted.
Hugs,
Pat


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