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...
Hello, I'm a newbie to the group. My doc is using the "treatment as the method of MG dx" so far the Mestinon(Pyridostigmine) has helped greatly. I've been taking it for 1 week, dosing at 30mg 2x's a day. Has anyone else been dx'd this way? I have Active EBV (Epstein Barr Virus), Hypothroidism, Myco Plasma Bacterail Pnuemonae (MPBP; harbors inside your red blood cells, basically at one point I had bacterial pneumonia that was never diagnosed & my immune system did not fight it off, nor did it kill me, so it now harbors in my red blood cells), now possible MG. The symptoms of the 4 above are similar, does anyone have any of the others above? I had a long 2 year battle w/ the symptoms of MG, docs telling me I had possible TIA's, MS work ups, Lupus, told I was crazy & just tired. Seems we all know how frustrating that feels!! I did get better for about 2 yrs., not the same, just better. But this mid-Feb the same symptoms came back full blown & not being dx'd before my family & I were very scared. Any advise or shared stories of multiple health issues or suggested plan are welcomed!
Thx, MeLisa
Thx, MeLisa
My first expereince with Mg was a respritory crisis for unknown reasons. My docs thought I had MG right away on exam but labs needed to come back . The 3rd day in the hospital a neuro muscle guy desided to put me on mestinon and when it helped -
He had a respritory therapist come in every 3 ours to messure my PFT"S( breathing) before each mestinon does and then 30 min after.
3 days of consistant improvement after every dose of mestinon and decline on hour 3 after taking it. He diagnosed me with MG.
IVIG also helped me.
Now- sisnce this I have a new doc who is saying not so sure MG, stricktly because my labs are negative. This is month 6 almost 7 for me with symptoms
My last hospital stay - myco plasma pnemonia was an issue for me. I was on prednisone and immunity down too far.
Are you on Prednisone?
jeannie
Has he mentioned a treatment plan for you?
E.B. responds to simalar treatment as MG does. Have you had IVIG for any of this?
Just courious:)
Best wishes!
Jeannie
I had an untreated flu like illness during a mycoplasma epidemic that left me with very reactive airways--especially to smoke and cold. I had some symptoms suggestive of MG and other autoimmune stuff going on prior and my dad and aunt had MG.
My first pregnancy after that was complicated by polyhydramnios and failure to progresss, my second child 3 1/2 years later probably had neonatal myasthenia. That was 37 years ago.
I am seronegative and have been on treatment just over a year. I started with 30 mg of Mestinon 3 times a day in January, with marked improvement, by May up to 4 to 5 times a day, by August 60 morning and night and 45 in betweeen and struggling. In October switched neurologists, now on prednisone 20 a day and Mestinon 60 4 times a day and doing quite well.
The mycoplasma epidemic was only identified in retrospect as part of an ongoing epidemiological study, since it had to be cultured for diagnosis at that time. On the other side of the family have been three generations of post streptococcal autoimmune disease, Sydenham's chorea, rheumatic fever, and glomerulonephritis. None of the three were treated with antibiotics prior to the complications.
I was seen by my Dad's neurologist and still had to beg for the first treatment. He read my SFEMG as suspicious, the second neurologist as positive. My EMGs taken in a cold room on muscles not giving me trouble at the time, were "normal."
b.
It seems that most of us with a conclusive dx came to it via numerous detours!
I have hypothyroidism as well but am unfamiliar with the other dx's you mentioned. My Neuro immediately started me on Mestinon 60 mg. 4 x a day as the ocular symptoms were quite severe. A week later when my blood work confirmed MG he started me on Cellcept and recently added Mestinon Timespan.
I hope you will soon have a treatment plan that works for you.
Larissa
Jeannie, my doc said IF I have a positive response to Mestinon, then he would say "that's our dx". Monday 4-9-12 will be a week of the med, my family says they have noticed a big change for the better, so I'll know more when I report back to doc. Thx for letting me know it can help w/ EBV! Whew! I won't know on his official dx til I see him again but I know he does do IVIG's.
Your question on the prednisone; I am not on it now although he had me on it for 2-3 wks(before the Mestinon) due to the typical malar rash u can get as a symptom of Lupus, my C-reactive & sed rate were high but the ANA negative, after more visits & the doc observing me, talking w/ my family, going over the TX symptoms (lived there when symptoms first started), he then decided to try the Mestinon.
B. Thx for sharing, I know trying to keep up w/ all the health issues & dr request are overwhelming, at least for me. Functioning w/ brain fog & you know all the other annoyances, is a challenge, but one I will never back down from & will always make lemonade somehow no matter what B!
Larissa, I hope the dosing plan of Mestinon Timespan & Cellcept will be the ticket for you to feel better! Question on the ocular, I seem to have "fuzzies,floater,blurrinses at x's but did you ever, or has anyone had one pupil be larger than the other at random, it can happen w/ either eye & be a bit larger to verrry much larger, as if the eye doc just dialated your eye?! Wierd, I know ;/
Jeannie, my doc said IF I have a positive response to Mestinon, then he would say "that's our dx". Monday 4-9-12 will be a week of the med, my family says they have noticed a big change for the better, so I'll know more when I report back to doc. Thx for letting me know it can help w/ EBV! Whew! I won't know on his official dx til I see him again but I know he does do IVIG's.
Your question on the prednisone; I am not on it now although he had me on it for 2-3 wks(before the Mestinon) due to the typical malar rash u can get as a symptom of Lupus, my C-reactive & sed rate were high but the ANA negative, after more visits & the doc observing me, talking w/ my family, going over the TX symptoms (lived there when symptoms first started), he then decided to try the Mestinon.
B. Thx for sharing, I know trying to keep up w/ all the health issues & dr request are overwhelming, at least for me. Functioning w/ brain fog & you know all the other annoyances, is a challenge, but one I will never back down from & will always make lemonade somehow no matter what B!
Larissa, I hope the dosing plan of Mestinon Timespan & Cellcept will be the ticket for you to feel better! Question on the ocular, I seem to have "fuzzies,floater,blurrinses at x's but did you ever, or has anyone had one pupil be larger than the other at random, it can happen w/ either eye & be a bit larger to verrry much larger, as if the eye doc just dialated your eye?! Wierd, I know ;/
Jeannie, my doc said IF I have a positive response to Mestinon, then he would say "that's our dx". Monday 4-9-12 will be a week of the med, my family says they have noticed a big change for the better, so I'll know more when I report back to doc. Thx for letting me know it can help w/ EBV! Whew! I won't know on his official dx til I see him again but I know he does do IVIG's.
Your question on the prednisone; I am not on it now although he had me on it for 2-3 wks(before the Mestinon) due to the typical malar rash u can get as a symptom of Lupus, my C-reactive & sed rate were high but the ANA negative, after more visits & the doc observing me, talking w/ my family, going over the TX symptoms (lived there when symptoms first started), he then decided to try the Mestinon.
B. Thx for sharing, I know trying to keep up w/ all the health issues & dr request are overwhelming, at least for me. Functioning w/ brain fog & you know all the other annoyances, is a challenge, but one I will never back down from & will always make lemonade somehow no matter what B!
Larissa, I hope the dosing plan of Mestinon Timespan & Cellcept will be the ticket for you to feel better! Question on the ocular, I seem to have "fuzzies,floater,blurrinses at x's but did you ever, or has anyone had one pupil be larger than the other at random, it can happen w/ either eye & be a bit larger to verrry much larger, as if the eye doc just dialated your eye?! Wierd, I know ;/
Jeannie, my doc said IF I have a positive response to Mestinon, then he would say "that's our dx". Monday 4-9-12 will be a week of the med, my family says they have noticed a big change for the better, so I'll know more when I report back to doc. Thx for letting me know it can help w/ EBV! Whew! I won't know on his official dx til I see him again but I know he does do IVIG's.
Your question on the prednisone; I am not on it now although he had me on it for 2-3 wks(before the Mestinon) due to the typical malar rash u can get as a symptom of Lupus, my C-reactive & sed rate were high but the ANA negative, after more visits & the doc observing me, talking w/ my family, going over the TX symptoms (lived there when symptoms first started), he then decided to try the Mestinon.
B. Thx for sharing, I know trying to keep up w/ all the health issues & dr request are overwhelming, at least for me. Functioning w/ brain fog & you know all the other annoyances, is a challenge, but one I will never back down from & will always make lemonade somehow no matter what B!
Larissa, I hope the dosing plan of Mestinon Timespan & Cellcept will be the ticket for you to feel better! Question on the ocular, I seem to have "fuzzies,floater,blurrinses at x's but did you ever, or has anyone had one pupil be larger than the other at random, it can happen w/ either eye & be a bit larger to verrry much larger, as if the eye doc just dialated your eye?! Wierd, I know ;/
MeLisa