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 no different than anyone else.
My neuro said once that they don't take emails.
They need to se their patients.
I would recommend you make an appointment and go see your neuro.
Your neuro job is to see and treat patients.
They can't do it by mail.Once you have a better relationship established and you neuo knows you better I bet you will get more info over the phine etc.
My neuro is out of town and I see him every 6 months. All other communication is by phone. If your neuro hasn't talked about the thymus yet as when you see him.....may be time for a new neuro.
Most likely they will give you the nurse first. They are better to advise than someone at desk.
Remember
YOU ARE AS IMPORTANT AS ANY ONE ELSE
Am I remembering correctly that you are in England and in the National Health Service system? I don't know how much of these issues are specific to the way that system works. Are there other Daily Strength members from Great Britain who can weigh in on the best way to proceed? I don't want to offer advice such as find a new specialist if that is not a feasible option for you.
Hope
I did have one doctor's office some year past tell me he would not be able to answer questions until I was referred back to him. Other doctors I have been referred to have left the door open and have never referred me back to the primary. It can be confusing for the patient who may not get the message they have been referred back to their primary. Dr.s have their own rules for who deals with who and we may not always get clear information when referred back.
With muscle weakness so many pirmaries do not have experience and do not feel comfortable as the only doctor involved. I think you need to get your status set-up so you can access a neurologist when needed. Then when you find out how that doctor wants to be approached between appointments. I live thousands of miles from a few of my doctors and have always told them they can phone or skype if needed. Billing can be done for those so they do get paid for their time.
I try to keep my questions brief but with relevant data enclosed. I happen to like to write mine out on paper so I can see it and some of my doctors prefer fax so that works for me. I also can call in to the office and access a nurse. She makes sure I get an answer.
I do not like to be much trouble either so understand those feelings but sometimes we just need answers so I handle what I can myself and ask when I can't I understand your feelings of not wanting to be a bother but there is no need to apologize to doctor's as they are in the "people care" business and if you need something that is legitimate. I think because you were referred and then turned back to your doctor is the reason you have not gotten a response and re-establishing a tie with either that neurologist or a new one is the key.
Good luck with this as I have traveled this road too and know it can feel confusing. Hugs, Marie
Good Luck
Chuck
I would look for another neuro, one who has your best interests first and wants to help you!
I hope you get some answers soon. Best wishes. Gez
I haven't had the chance to try this out yet - thankfully - but it will be interesting to see if it works and I get the advice I need.
I would not call your situation over sensitive as we are all scared and we just want to feel safe. Maybe see another GP and get a referral to another neuro?
Thanks again everyone - you are all amazing and so helpful!! I will speak to my GP on Tuesday and see what her thoughts are about this....hopefully we will work out where we go from here! x
To echo what another snowflake said about the healthcare system in your country, I have to wonder how much of what's going on has to do with the "system". I don't know enough about it to comment on that issue but some of it sounds like a lack of compassion and sensitivity to me. Unfortunately, many doctors have that "God" complex and I'd like to believe that your neuro is not one of them.
I think that the length of time that you've had to wait is WAY too long. The one thing that you might want to try when you write to your neuro, is to be very specific about your questions. Vague or broad statements leave too much to chance and could make your neuro think you are just updating him. If you asked specific questions and ask for a response, you MIGHT have a better outcome.
(For example, "I know that I over did it with my travels but I am still having significant weakness in my legs and arms, my hands are shaky and I can't stand for more than 3 minutes at a time. I would like to know if we can add any medications to improve these symptoms? Also, can make temporary changes to my current treatments until I feel more stable? If so, I'd like to know what those changes are and what side effects to expect from these changes? Please call me back at 867-5309...")
(Obviously, if you are already doing this and still not getting a response it is probably time to hunt for a new neuro.)
If you really like the neuro though and want to give him a second chance I would ask to be re-referred to him so that you can address this face to face. Let him know about your difficulties and ask him about the best method of communication. Be frank with him and unapologetic. You have to be firm about what you expect of him/her (but still polite and respectful, obviously). There is no need for an apology for trying to get answers. It is not your fault that you have MG and you deserve the best care possible. Make a list of all of the questions in advance and take it with you (or load it on your phone) so that you don't leave anything out.
There is no excuse for poor responses. Whatever their reasons, I wouldn't wait more than 24-48 hours (maximum) for a return call/message. If you try all of these things and still have difficulty I would seek a new neuro. It doesn't matter how good a neurologist is or how experienced they are with MG, if you can't communicate with them to YOUR satisfaction.
I hope that you start to get some answers. Please keep us posted about the outcome of this issue. Big hugs for all that you are going through.
Angie
One more thing... because of the very nature of MG, it warrants frequent calls and questions because it is ever changing and drastic at times. So if your neuro isn't equipped to handle these, you need to find one that can.
BTW, who cares if you are the "problem patient" as long as you get the care that you need. I say that as the medical professional who handles these kinds of calls and questions every day. I have no pride when it comes to this disease. I will do whatever I have to in order to get the proper care. I am also seronegative and only have a mildly positive EMG to support that. I can't worry about having my diagnosis taken away because I'm "pestering" them.
Okay, I didn't mean to write a book to you but I hope this helps. More hugs and lots of aloha coming your way.
Angie