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 all,
It has been a month since I saw my family doctor and yesterday I was at the end of my rope so I called and got in right away.
I told him how many new symptoms have come on in the last few weeks such as short of breath, neck fullness, gaggy feeling, fullness under my breast bone, trembling legs, hoarse voice at times, hard to talk and even greater fatigue.
I asked him if my AChR had come back. He said "yes and it came back negative". I asked about doing a MUSK and LRP4 and he told me "there is no point, they are extremely rare, the AChR is most popular and with it negative, I can rule out MG".
When everything started back in January my symptoms were a little more like MS, like vertigo, balance problems, numbness in limbs etc.
Lately they seem to be more like MG.
MG / MS - I don't want any of this! I want to be back to normal and I get the feeling my doctor thinks I'm nuts or just looking for attention or something. It's the way he looks at me. Maybe I'm reading more into it than what it is because I'm scared, paranoid perhaps, I dunno but what I do know is something is wrong.
I see the Neurologist for the first time next week.
I'm nervous because :
-The Neurologist is only 1 of 3 in my city and none of them specialize in anything, they just regular ones.
- I have a feeling my doctor likely reported that I have anxiety in his referral and the Neurologist will likely say it's depression.
- This Neurologist has bad reviews.
- I feel if this doctor doesn't help me, it will be the end of me cause I will have no where else to turn. I'm scared of the thought of this because I just can't continue living with all these symptoms with no medication to help alleviate some at least.
Just needed to vent! Thanx for listening.
Connie
It has been a month since I saw my family doctor and yesterday I was at the end of my rope so I called and got in right away.
I told him how many new symptoms have come on in the last few weeks such as short of breath, neck fullness, gaggy feeling, fullness under my breast bone, trembling legs, hoarse voice at times, hard to talk and even greater fatigue.
I asked him if my AChR had come back. He said "yes and it came back negative". I asked about doing a MUSK and LRP4 and he told me "there is no point, they are extremely rare, the AChR is most popular and with it negative, I can rule out MG".
When everything started back in January my symptoms were a little more like MS, like vertigo, balance problems, numbness in limbs etc.
Lately they seem to be more like MG.
MG / MS - I don't want any of this! I want to be back to normal and I get the feeling my doctor thinks I'm nuts or just looking for attention or something. It's the way he looks at me. Maybe I'm reading more into it than what it is because I'm scared, paranoid perhaps, I dunno but what I do know is something is wrong.
I see the Neurologist for the first time next week.
I'm nervous because :
-The Neurologist is only 1 of 3 in my city and none of them specialize in anything, they just regular ones.
- I have a feeling my doctor likely reported that I have anxiety in his referral and the Neurologist will likely say it's depression.
- This Neurologist has bad reviews.
- I feel if this doctor doesn't help me, it will be the end of me cause I will have no where else to turn. I'm scared of the thought of this because I just can't continue living with all these symptoms with no medication to help alleviate some at least.
Just needed to vent! Thanx for listening.
Connie
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I am so sorry that you are going through this, I am sero negative, my neuro said there are so many antibodies that could cause MG and they only have commercial tests for a couple of them. He didn't care that my AChR was negative. Mestinon works and my tensilon test was positive (have you had that injection?, they do it right during your appointment). Tamara is right, as women they just think we are nuts (hence my 7 years of loss of functioning until someone finally listened to me, just like so many of us out there), and we can be depressed and anxious because we can't breath or walk or live!!!
Keep us posted, my heart goes out to you, I am so sorry for your struggle right now. My symptoms looked like MS too, but MG gave me all that you listed, numbness and dizziness as well. Fingers crossed for you.