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, I am looking for some help/advice from any Myasthenia Gravis Sufferers - I'll try to keep this as brief as I can! I am 32 but 9 years ago I started with one sided facial weakness thought to be bells palsy initially but that was dismissed as it only affected my mouth not upper face - Basically over the course of 18months I had breathlessness, muscle aches/fatigue and ended up on crutches as I felt like my legs had forgotten to walk somehow despite having full range of movement at rest? I had every test going and eventually was told it was "Chronic Fatigue with Psychological factors" and offered anti-depressants, which I didn't take as I didn't feel depressed. I gradually got better and over the years have had temporary episodes of facial weakness, breathlessness, aches that have usually settled withing a week or so and so I just put it down to tiredness/illness etc. I never fully regained the energy levels I had pre-illness but led a relatively normal life.
2 months ago the facial weakness returned, again thought to be bells palsy, I had 2 high doses of steroids which initially made it worse but then settled it for 7-10days before it returned, I am confused as I wake looking almost normal - I just have a slight drop on my top lip but an hour later my mouth can drop completely causing my eyelid to droop also? This can fluctuate throughout the day improving when I rest and worsening when I'm working etc. I have no abnormal sensations in my face - just occasionally it feels tight/pulling and I am aware of the droop! I can move the muscle if I conciously make it and it just feels tired and sometimes stiff?? But when I'm talking etc is doesn't move automatically as it should. I have weak neck muscles by the end of the day, the back of my neck aches and sometimes my head a little and I feel I want to support my head, I also have pressure in the centre of my chest if I'm rushing around or stood at a checkout holding a few items! My thighs also ache a little and when I get into bed at night I could swear I've done a full workout or been stood all day as my legs are so tired and tingly!! I do feel that I have an element of general fatigue but as I said - this has never recovered from 9years ago and I also have 2 children now!
My neurologist has ordered the same tests as last time - chest X-ray which was clear in 2004 and last week. Full bloods including Antibody AChR (but NOT MuSK either time) and they are also clear both times. My MRI 9 years ago was clear and I am due another on Monday. I had the tensilon test in 2004 which they said was negative but interestingly I had a respiratory restriction that could not be explained by an ECG or x ray so they didn't tell me about it! I have tried the ice test on my face and it does improve my mouth and eyelid droop.
I hope I haven't gone on too much there and bored you to tears but I wonder if any of you think this sounds like MG as this is the only thing that I can relate my symptoms to?! I know things have changed in 9 years and I really need an answer to this. My problem is I have been referred to the same neurologist who basically told me it was all in my head 9 years ago and I feel I can't ask him if he thinks it might be MG.
Thank you for reading this - I would be so grateful for any advice you may be able to give me :)
2 months ago the facial weakness returned, again thought to be bells palsy, I had 2 high doses of steroids which initially made it worse but then settled it for 7-10days before it returned, I am confused as I wake looking almost normal - I just have a slight drop on my top lip but an hour later my mouth can drop completely causing my eyelid to droop also? This can fluctuate throughout the day improving when I rest and worsening when I'm working etc. I have no abnormal sensations in my face - just occasionally it feels tight/pulling and I am aware of the droop! I can move the muscle if I conciously make it and it just feels tired and sometimes stiff?? But when I'm talking etc is doesn't move automatically as it should. I have weak neck muscles by the end of the day, the back of my neck aches and sometimes my head a little and I feel I want to support my head, I also have pressure in the centre of my chest if I'm rushing around or stood at a checkout holding a few items! My thighs also ache a little and when I get into bed at night I could swear I've done a full workout or been stood all day as my legs are so tired and tingly!! I do feel that I have an element of general fatigue but as I said - this has never recovered from 9years ago and I also have 2 children now!
My neurologist has ordered the same tests as last time - chest X-ray which was clear in 2004 and last week. Full bloods including Antibody AChR (but NOT MuSK either time) and they are also clear both times. My MRI 9 years ago was clear and I am due another on Monday. I had the tensilon test in 2004 which they said was negative but interestingly I had a respiratory restriction that could not be explained by an ECG or x ray so they didn't tell me about it! I have tried the ice test on my face and it does improve my mouth and eyelid droop.
I hope I haven't gone on too much there and bored you to tears but I wonder if any of you think this sounds like MG as this is the only thing that I can relate my symptoms to?! I know things have changed in 9 years and I really need an answer to this. My problem is I have been referred to the same neurologist who basically told me it was all in my head 9 years ago and I feel I can't ask him if he thinks it might be MG.
Thank you for reading this - I would be so grateful for any advice you may be able to give me :)
It certainly sounds like Bell Palsy and possibly something else in addition. Not sure if it is MG though. There are some other conditions that mimic some of the symptoms of MG. Keeping in mind that MG is a rare disease. One thing that may be of interest to some around here also is that Bell's Palsy can be from EBV and or Herpes Zoster from Chicken Pox as well...
Wish I could be more help.
Do you have any rashing, like in Lyme Disease?
http://en.wikipedia.org/wiki/Lyme_disease
Probably have been through some diagnoses also. Have you done some research? What else have you ruled out?
Many of us have gone through many years (I believe 5 is an easy average) of various issues before diagnosis. The problem is that many autoimmune disorders have symptoms that can be from any one of a series of disorders.
The first neurologist I saw told me that I absolutely did not have MG. He was incredibly wrong. The second told me during the first visit that he was fairly sure I did have it but wanted some more tests to confirm.
MG diagnosis is more difficult to diagnose for 2 primary reasons. The first is as BCCanada states, each person presents differently and as CGreens states the symptoms are similar to those of other disorders. The second is that there is no single solitary test that is 100% accurate at proving MG.
I and many others here are seronegative meaning that we do not have the MG antibodies show up in our bloodwork. Some doctors think that you have to be so weak that you can't stand or hold certain body parts up. My diagnosing neuro caught it a little earlier than that and said that weakness should be considered against someone your gender, age, body style and activity level. Meaning that I didn't need to be as weak as an 80 year old woman to have muscle weakness. I could see that my muscle weakness was not a normal muscle loss for someone my age.
Bottom line, it sucks, but you may have to go to multiple doctors to get a good diagnosis.
Kimber
I wish you well in your journey and hope you find an answer.
cgreens - Bells Palsy seems to have been completely ruled out both now and 9 years ago so unfortunately that doesn't explain my symptoms :( You are so right - I would just like to know what my condition is so I can deal with it and know what to do for the best! Apart from Bells Palsy I can find nothing else through my research which explains my symptoms other than MG. I have no rash like Lymes Disease and had a lumbar puncture 3yrs ago for viral meningitis which seemingly showed nothing untoward either. I think it is the fluctuations that I experience in muscle weakness and symptoms which leads me here as it seems to be the strong similarity with most or all MG suffers from what I have read?
Russ Hanson - thank you, I will certainly keep your advice in mind and pluck up some courage at my next appointment if my neurologist is at a loss as to where to go next!
BCCanada - Thank you for taking the time to reply - I really appreciate it and you are the first person in 9 years to tell me you understand what I am saying and actually experience it yourself which is a huge thing for me as I have been convincing myself that I must, somehow be doing this to myself as the only explanation I have had is that it is in my head! So again - thank you!
Barbel - thank you so much - you are right -I would have preferred to see anyone but him but it seems here in the UK you get who you get and he is respected as one of the best so I just hope he sees something this time that he missed 9 years ago and I finally get an answer - whatever it may be.
Kimber and MayMayKnits - again, thank you - you both give me hope that I am not alone in struggling for a diagnosis! Kimber your story gives me hope that if I do get told again that it is in my head then maybe I shouldn't just give in and maybe I should push to see someone else - I am so pleased that you finally got the diagnosis and treatment you need.
Thank you all again for your time and replies - I had my MRI scan today, this time with contrast/dye so maybe something will show there, but I have to say I am not hopeful as I truely feel that what I have is either MG or very closely related in some way. I suppose now I just have to wait for my neurologists verdict! Wish me luck!
Some other similar conditions include Ramsay Hunt Syndrome:
"A 'drooping' of the face on the affected side.
An inability to close the affected eye, smile, wrinkle the forehead and whistle.
Tearing or dryness occurs because the eye does not close completely.
Speech may be mildly slurred."
http://www.ramsayhunt.org/info/symptoms
http://www.tampabayhearing.com/bellspalsy.php
Something I wonder if I could possibly have or have instead of MG despite testing positive is Guillian-Barre:
http://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome
Good luck to you!
The biggest problem we have with diagnosis in modern times has been the reluctance of neurologists to make it without conclusive blood or EMG studies. The tendency to dismiss significant history, examine at times and under conditions when there are not conclusive physical findings has led to delays when treatment might have been initiated before symptoms become more severe and difficult to treat
We are most likely to find treatment and diagnosis when we see neuromuscular specialists at hospitals where larger numbers of MG patients are seen.
Good luck and don't give up!!! b.
Today my legs have started as they did 9 yrs ago - very weak and a strange ache/deadness , I find myself walking like a duck and using my arms for momentum! Does anyone else experience this? It's quite scary as I ended up on crutches last time for 12 months :(
Thank you bweeds - I am determined to keep going this time and not just accept that somehow this is in my head, I know it is not and I will keep going asking for second opinions this time!
Thank you all once again - you are a great comfort to me through this!x