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Myasthenia Gravis brought on by Iron Infusion/possibly Covid
I have had an illness for over two years that no Doctor can figure out.I just went to an infectious disease doctor who tested me for alot of diseases including Myasthenia Gravis.The specific test he ran for Myasthenia Gravis came back with an antibody that was borderline,but labcorp ran additional tests and told my doctor it was negative.I have slow chewing,talking,swallowing,my breathing is not normal because of no strength in my stomach or diaphram,trouble walking,No gag reflex,extremely dry eyes that are painful,squinty and extremely sensitive to light.I have alot of other symptoms,but I thought those were many that involved in MG.I was looking at LEMS,Polymyositis,Gullian Barre and a few other diseases.I feel like they all have similarities.The problem is the Doctors are not finding much of anything with the tests they have run on me.I had a reaction 5 days after an iron infusion for anemia and by 6 months I was bedbound for months.My whole body was basically attacked.Has anyone had Myasthenia Gravis with a Borderline or negative test?I know Autoimmune Diseases are hard to figure out.I am just trying to figure it out myself with help from others.The Doctors I have met with can't help me.
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Your symptoms definitely sound like MG to me and they can get much worse. Antibody tests don’t always reflect a positive result even if you do have it. Get in touch with MGFA and they could possibly help you find the a neuromuscular specialist near you who could more adequately diagnose and treat you. You may have to travel a ways to go to one. I go to one at a large university teaching university a hundred miles from my home, but it’s worth it because if my symptoms get really bad and I go in to crisis I lose ability to breathe and have to be intubated. This has happened to me three times before the best treatment for me was found. Hopefully you will improve and find the right doctor who KNOWS about MG.
Thankyou so much for responding!I think I must have MG or something close to it.We have so much Lupus on both sides of the Family I thought it may be that.I had to go to the ER several times for not be able to breathe or swallow,but all they found was extreme constipation.I think whatever disease this is is causing it though because at the beginning it was like my whole body stopped functioning.The only thing I can think of is that my body was so worn down from years of anemia from heavy periods that when I finally got the iron infusion and possibly covid my immune system went haywire.I remember years ago before I was diagnosed with Hashimito's it was a similar situation.My whole body shut down.I also have had a constant dry cough that came on months ago that won't go away.I don't know if that is part of MG.I was even looking at ALS,but my arms and legs are big and inflamed.When I walk it is like walking with cement legs and I think with ALS you lose alot of weight.At the beginning when I could not swallow I only weighed a little over 100 pounds and luckily my primary thought to give me steroids.That was the only thing that gave me the ability to eat again.I will have to find a neuromuscular doctor.The neurologist I am seeing is not that helpful and whatever I have is just not showing up on tests and I am not getting any better.Do you happen to get IVIG treatments?I was reading that those can sometimes help.
Yes, I get ivig every four weeks. I also get plasmapheresis every eight weeks and my condition has stabilized finally. MG is no joke and a neuro that doesn’t treat MG won’t be any help. I nearly died in my first crisis before they finally transferred me to the large teaching university hospital a hundred miles away where I was finally diagnosed. And even there we had to try several treatments ( including one drug not approved at the time) before I could recover from crisis and stay recovered.
That is so scary.I am glad that you are doing better.I was so sick at the beginning of this I don't know how I made it.The worse part is the doctors not finding much of anything.It is like an invisible disease.I told my neurologist about my weakness in the diaphram/sternum area.I was trying to tell him that because that holds the belly down I just don't have it anymore.All my strength in that and the belly are absolutely gone.I just have to find a doctor that understands what I am talking about.Thankyou for letting me know about the IVIG infusions.I did not know anything about them until I started reading up on them.They treat alot of conditions.
Yes, your best bet would be to check with the MGFA about a neuromuscular specialist near you. Also do some research on plasmapheresis because it’s a very effective treatment especially when mg flares or goes into crisis.
I will!Thankyou so much for your help!I am glad that you are doing better!Have a Great Day!
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1 ReactionPlasmapheresis can also help especially if you fail IVIG.
Thankyou for responding!I am going to have to do something because I am just getting worse. The problem is my Neurologist is not finding much.I will have to find a neuromuscular doctor.I was just doing some research and it said that heavy menstrual periods can bring on MG.I had severe periods for years before this came on and the doctors did not know what was causing it.Did you take steroids at all and do you think that could help me at all?I think that is all I could probably get from this Doctor.Also have you or do you know anyone that has gone into remission with this disease?
I don’t have MG but I perform plasma pheresis procedures on patients with MG. I am not sure about the questions you asked. I have seen patients significantly improve with the procedure though.
Thankyou so much!I am going to ask my doctor about this.I can't really exercise because of the weakness throughout my body and I have gained too much weight.I am nervous because I know the extra weight is so bad for the heart and other organs.I just want something to help get me back to where I can exercise a little again.Thanks Again!