Hi Kris and welcome to the group!!!
To me your symptoms do sound like MG. All of the symptoms you listed are signs of MG. I also have the swallowing difficulty you mentioned. Mine comes and goes too and feels like there is a bubble in my throat and sometimes when I'm eating it feels like it it stuck there and won't come up or go down. I am assuming since you haven't been officially diagnosed you aren't on any meds but if and when you start mestinon taking it 30 minutes before eating will help with the swallowing problem. My Neuro told me that this week and it really has made a world of difference.
I also have the some shortness of breath but more often it feels like my heart is racing trying to keep up. I am a smoker too and TOTALLY understand you being hesitant to mention that but you really should. I found out that I also have a lung disease and am not sure if it is autoimmune related or smoking related. I am trying to quit smoking right now because if it is from smoking it will improve. There are several others on this forum who are smokers too so you are certainly not alone in that. You just want to make sure it is smoking and not weakness in your chest muscles.
As for your symptoms progressing that may or may not happen. MG varies in people from mild to severe. The good news is that after 3-5 years you can usually assume it will not progress anymore than it has. If your nerve conduction test comes back positive you will most likely start taking Mestinon. Some people have excellent results and others don't. I am one of the ones who only gets slight improvement from it and am now taking Prednisone too. It has made a HUGE difference. I remember how confusing everything was while I was waiting for my diagnosis and the people in this group were incredible!!! They always answered my questions and I felt like I knew what to expect at my next appt. Please keep us posted on your progress.
Kendra
Quote:
Originally Posted by Kris2958
New to this site and possibility of MG diagnosis. Seeking additional information, so here goes my, hopefully, short story: Double vision started about August, but only in left eye while looking to the left. Hadn't pieced together any other symptoms yet.
In September, saw an optometrist. Stated eyes fine and referred me to a neurologist. First try and actually found a very knowledgeable/reputable one (how lucky is that in our area.
Main symptoms discussed were fatigue and double vision and headaches. Headaches have been a common 'thing' with me for a long time. Dr. watched me walk, did a 'finger test', full medical history and told me I had a 'sixth nerve palsy'. Suggested an MRI and battery of over 30 tests. He suspected MS or MG. MRI was clean/tests revealed Vit B and Vit D deficiencies.
Next step...lumbar puncture. LP was done in October. Negative results for anything. Saw my neuro early this week and referred me for a brain angiogram w/ dye to rule out aneursym. My neuro stated that if the angio came back normal, he would probably start treating me for MG after he did some sort of test on my legs that can be done in-office. Mentioned it was like an EKG (?) where they connect things to your legs and, can't remember what all was said, but I believe, measures the impulses in nerves.
I also mentioned to my neuro that 8 months ago, I felt like I had a lump in my throat and trouble swallowing, even feeling at times as though I couldn't get food or liquids down. I did see an ENT who prescribed me reflux meds and2 weeks after, it was gone. My neuro wanted to know why I didn't mention this earlier. I guess I thought it was a different issue. He stated he wasn't so sure of the reflux bec it had taken quite some time for those symptoms to go away.
Went this morning for angio and spoke with the radiologist afterwards , surprisingly, while waiting the normal 3 hours before being released. Negative for aneursym.
Tonight I'm left wondering after doing research on MG...do I have this?
Here's the rundown and I would absolutely love some feedback from those in the same situation:
1. Double vision looking to the left, sometimes not able to focus looking ahead
2. Swallowing difficulty for about 6 weeks - experienced one time 8 mos ago
3. Occasional shortness of breath after activities. Did not mention to neuro bec I smoke and assume that's the cause
4. Feel tired
5. Did have a few experiences apprx 1 month ago where I felt like I could see a word in my head, but while talking, couldn't get it out.
If this IS MG, what happens next?? How long before other symptoms appear? Will see the neuro next week for the next step. Thanks for any replies!!!!
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