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Sunday, April 30, 2017
Could it still be MG?
I woke up with Double vision t lasted for 71/2 weeks went to ER. First thing they thought was MG, then when Dr. heard I had Optic Neuritis a year and half ago and had bee seen by a MS specialist I think that went out the window, referred me back to MS dr. Went to see him and MRI of brain and spinal tap seems to have ruled that out went back to him with same symptom of diplopia and of course new ones such as SOB,muscle fatigue but I was most concerned about chest pain and pain between my shoulder blades he wasnt concerned. He ordered blood test for MG stating that if this was neg he would refer to neuromuscular specialist. It took 1month for results! He is now out of country got results from collegue. All NEG! Told him how my symptoms have progressed such as I not being able to hold myarms above my head to blow dry my hair,cant wipe off counters or tables cant walk at times I have to slide my feet cant peel potatoes anymore I cant hold my neck up at night I am self employed with hubby we have a restaurant cant work at this time because I cant function this is terrifying me I am 43y female who is theone who takes care of business works 11 hours a day usually, I am having a feeling of forgetting how to swallow?? All of this occured 5 weeks post op from surgery for tarsal tunnel release could this be related? of course the dr said that because of neg blood work it is positive i dont (imcanttypemuchmore:) have mg! but somethingis vvery wrong with me im scared. what do ousuggestforme? scaredand frustrated
It sounds very frustrating for you. It also sounds like it must be frustrating for your physicians when they can't find definite answers.
First let us define myasthenia gravis; it is a disease of bad communication between the nerves and the muscle, usually because our immune system is attacking that neuromuscular junction. It usually presents as
- Fatiguing weakness of proximal muscles (shoulders, thighs, hips)
- Diplopia (double vision)
- Ptosis (droopy eyelids)
And can even present with
- Dysphagia (swallowing problems)
- Dyspnea (breathing weakness)
Fatiguing weakness is a big issue, and key, especially with double vision (not blurry or burning), meaning that it fluctuates during the day (better after rest and worse after exertion). Numbness, tingling, joint soreness, blindness, muscle pain, and chest pain are not usual symptoms.
There are some forms of myasthenia that have negative antibody testing—we call this seronegative myasthenia. But the red flags for me would also be the optic neuritis diagnosis from 1.5 years ago. This would not be experienced in myasthenia gravis. Was it really optic neuritis back then?
Keep working with the MS specialist and the neuromuscular specialist and encourage them to work together or at least talk about your case. Also do not forget about safety: if you are having worsening shortness of breath or worsening swallowing difficulties, get yourself to the nearest hospital to be evaluated by medical staff.
Robert W Neel, IV, MD
Assistant Professor of Neurology
College of Medicine
University of Cincinnati