My PCP says...
Although the neuro has yet to diagnose me, he put me on Mestinon and it seems to help (although only 2x per day, AM and bed) but my PCP says I can't have GMG because the ACHR was negative and it doesn't "come and go" but just gets progressively worse. Based on what I've read on here and other places, my PCP is wrong. But since I don't see a neuro again for a while and I don't have a firm dx, I am nervous about advocating that I have GMG with my PCP. I'd love to hear any thoughts you all have about these statements. Thanks
Just found you and hope you have answers by now. There are 3 antibodies and some of us are triple sero neg which only means there are more to discover. Push to get Mestinon every 4 hrs as trial for a few wks, expect some loose stools but look at how you are feeling and message your neuro between visits if you need. You matter. When you do have appt write down symptoms, response to Mestinon being concise, bullet pointed. Give them a copy. Strongly encourage communication with PCP. You can do this. Thank you for your encouragement. I actually went to a new PCP last week - and she mentioned MG without my prompting, and is sending me to a rheumatologist. When I told her what my previous guy said, she rolled her eyes and said "Well, I guess he's never heard of sero-negative MG." And I felt like I was being heard for the first time in a LONG time. doing virtual happy dance for you!! Hope you start getting answers and good days soon!
How are you doing? Many of us are seronegative meaning noting shows in our blood work, but we still have MG!! Best Wishes!! ❄Sally Farrier...Myasthenia-Gravis.com (Team Member). My neuro told me that labs cannot rule out an MG diagnosis, only rule it in if you are positive. Also, he said if mestinon alleviates some of your symptoms or at least helps with them, it's indicative of MG as a diagnosis because it will not help you if you don't have MG. If you have an email for your PCP you might send one medical journal article about seronegative MG to him/her. That way there's no embarrassment or confrontation. If she/he just ignores it and continues with the same direction, time for a new PCP. You don't want someone like that treating you for anything. Here's a respected publication which explains seronegative: https://n.neurology.org/content/48/Suppl_5/40S
I am seronegative and don't fit that category. I have had Mg symptoms that started at the age of 10 (1972) didn't get a Dx until Oct. 2020. Many mis dx and no treatments. From my understanding when MG starts that early someone can go into remissions more often without treatment, more like RRMS rather than MG. Back in 2005-7 I was bad enough the Dr.'s were looking to place me in a nursing home for the rest of my life along with informing me that they didn't know what kind of neurological condition I had to make final arrangement as there was nothing they could do if my breathing got worse! Then from 2010-end of 2019 only minor issues. Then full flare again Jan 2020, given Mestinon Oct.2020. with possible MG. Jan.2021 with a Dx of "Mild" seronegative MG. After being transported by ambulance at my neurologist request... for emergency IVIG (that was refused because of the "Mild" they placed on me at the university. With a single breath count of 3 NIF of 13 at the time. Time of release the next day single breath count of 13 NIF Of 13 told I was fine and all functional because I am seronegative, and it is always mild and would not cause this type of Issues. When Mine gets bad It's bad for a few years. (Not just a few days that what I call more of my remission.) With the whole 9 yards of symptoms. Breathing, chewing Swallowing, fatigue, etc... Hope this helps answer your question. Best Of Wishes to you!! ❄Sally Farrier...Myasthenia-Gravis.com (Team Member). - wow, sounds like the meaning of “mild” is used subjectively by some and that’s discouraging to hear when it takes place by medical professionals. I understand there’s a scoring chart called MG-ADL and I thought that was supposed to be part of rating people more objectively. But even that chart seems odd to me because it implies that each of the categories has equal weighting and obviously someone’s inability to breathe is more critical then someone’s ability to brush their hair.
Hi
, I'm glad to hear the Mestinon is helping. This is definitely a tricky situation and I can see why you would be nervous to advocate with your PCP. I'm eager to hear other community members' thoughts on this topic as well. Obtaining an MG diagnosis is not always a straight forward process and every person with MG is different. Have you thought about what you might want to say to your PCP while you await your next neuro appointment or the scenarios where you think it might become necessary to advocate? Best, Lauren (Myasthenia-Gravis.com Team)
