Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone - I just wanted to pick your brains to see if you think I am being a little too sensitive here!!
As you all know I only have a clinical diagnosis of MG through response to mestinon and being seronegative with unremarkable EMG makes me wary of bothering my neuro as I have read about people having their diagnosis removed etc.
You also know from my posts that I have been struggling since my trip at the beginning of December and so after almost 2 weeks of no imporovement I emailed my neuro's NHS secretary to ask if she could ask my neuro if there was anything I could do to get myself back on my feet - I explained that my GP has admitted that she knows very little about MG and I wanted to save her the appointment and letter to him and thought I would write to him directly to try to save time and work for all involved - his secretary replied a one line email to say he thought I'd over done it with no advice. So I replied, very apologetically and said I know how busy they are and didn't want to pester either of them, but I was wondering if my neuro felt there was any point to me asking my GP about a CT scan of my thymus as I have only had an x-ray and I have been struggling with MG and Costochondritis/Chest inflammation and wondered if my Thymus could be involved... this email was just before Christmas so I explained that I knew they were busy and didn't expect an immediate response but would be grateful for any advice and sorry if I was making a nuisance of myself - I wished them both a Merry Christmas and unfortunately had no reply. So, a couple of weeks later again, I decided to write to him at the private hospital he works at ( as I initially saw him there before being transferred to the NHS for testing) as I was still struggling and wanted him to be able to bill me for his time as I didn't want him to think I was expecting him to do extra work for me as he is very busy....I know he was personally handed the letter by the receptionist who emailed me to confirm this, but that was 4 weeks ago and I have no reply :( I tried to ring his Private secretary to see if he had replied (as maybe it has got lost in the post) about 2 weeks ago but she only has a mobile number and isn't based at the hospital, so I left an answerphone message but had no reply from her either!! I assume she only works part time and this may be her personal number but thought she might reply??
I know he discharged me back to my GP but he said to go back if I had problems and I just wanted to ask if there was anything my GP could do from her to save me the trip and him the appointment...but I know feel that he might think I am a nuisance or just isn't that bothered maybe??
Am I being too sensitive - how would you feel about this??
Thankfully my GP upped my mestinon which has helped and she wants to write to him or refer me back but I feel like I have made a nuisance of myself a little!!
Thanks everyone - I know this it trivial compared to what some of you are dealing with but you all know Doctors as well as I do and I thought you would be the best people to ask! x
As you all know I only have a clinical diagnosis of MG through response to mestinon and being seronegative with unremarkable EMG makes me wary of bothering my neuro as I have read about people having their diagnosis removed etc.
You also know from my posts that I have been struggling since my trip at the beginning of December and so after almost 2 weeks of no imporovement I emailed my neuro's NHS secretary to ask if she could ask my neuro if there was anything I could do to get myself back on my feet - I explained that my GP has admitted that she knows very little about MG and I wanted to save her the appointment and letter to him and thought I would write to him directly to try to save time and work for all involved - his secretary replied a one line email to say he thought I'd over done it with no advice. So I replied, very apologetically and said I know how busy they are and didn't want to pester either of them, but I was wondering if my neuro felt there was any point to me asking my GP about a CT scan of my thymus as I have only had an x-ray and I have been struggling with MG and Costochondritis/Chest inflammation and wondered if my Thymus could be involved... this email was just before Christmas so I explained that I knew they were busy and didn't expect an immediate response but would be grateful for any advice and sorry if I was making a nuisance of myself - I wished them both a Merry Christmas and unfortunately had no reply. So, a couple of weeks later again, I decided to write to him at the private hospital he works at ( as I initially saw him there before being transferred to the NHS for testing) as I was still struggling and wanted him to be able to bill me for his time as I didn't want him to think I was expecting him to do extra work for me as he is very busy....I know he was personally handed the letter by the receptionist who emailed me to confirm this, but that was 4 weeks ago and I have no reply :( I tried to ring his Private secretary to see if he had replied (as maybe it has got lost in the post) about 2 weeks ago but she only has a mobile number and isn't based at the hospital, so I left an answerphone message but had no reply from her either!! I assume she only works part time and this may be her personal number but thought she might reply??
I know he discharged me back to my GP but he said to go back if I had problems and I just wanted to ask if there was anything my GP could do from her to save me the trip and him the appointment...but I know feel that he might think I am a nuisance or just isn't that bothered maybe??
Am I being too sensitive - how would you feel about this??
Thankfully my GP upped my mestinon which has helped and she wants to write to him or refer me back but I feel like I have made a nuisance of myself a little!!
Thanks everyone - I know this it trivial compared to what some of you are dealing with but you all know Doctors as well as I do and I thought you would be the best people to ask! x
You are right though - I think In worry too much about what people think and don't want to be seen as a "problem" as they may not want to help me....the fear of being back to undiagnosed scares me more than this illness at times...how silly is that?! I think spending years of no one believing me or being interested in what was wrong has impacted my self-confidence and I just don't want to go back there again!
I really value your advice - you know first hand how the clinical processes work and then personally how difficult this all is! So thank you again for all of your help....maybe I will try to speak to his secretary again tomorrow and check that it hasn't been lost in the post...or that she hasn't been on holiday?! x
For goodness sake and your own and your kids call them up, don't tell them they're busy, if they're good, they will be, and already know it.. . they know you're not their sickest patient or you would be in the hospital.
Ask for an appointment because you have two kids and you and your PCP think you are deteriorating. If asked if it is an emergency, you can say no, but you are afraid it may become so, since you are having breathing and swallowing problems. They will ask any other questions or tell you to have your doctor call or fax a referral. If they won't respond, you need someone else to take care of you. I know you have had a rough time, and it is scary. But this is a scary and unpredictable disease and neither you nor the doctor can afford to be wishy washy. Big hugs from here-- it is hard to have to do what we are not trained to do or what doesn't feel comfortable with our personality, but you are sick and need help! Please do not "maybe try to speak" !!!! I'll have to figure out when your tomorrow morning is, so I can hold you in the light. b.
David - you are right, I think I am definitely sensitive about being sensitive!! I got upset with a relative today as she said she felt I was just anxious about my breathing and how I can talk ok and she sees lots of old ladies struggling with catching their breath....I know she is right but I tried to explain that MG is not asthma and it can change rapidly without the telltale signs....I then felt bad for getting upset and being sensitive about it when I know MG isn't an easy one to understand! I am sorry you're here - I really hope your new Neuro is good and takes good care of you....let us know how you get on :)
Thanks again everyone.x
You need to forget the letter and call your neuros office, tell lthem you are having breathing issues and need to see you neuro asap.
You are playing with fire here.
You are going to have way bigger problems than a drive if you don't watch out.
I wish I would have had this group before my crisis.
It may have saved me weeks in intensive care.