I have Myasthenia Gravis and Parkinsons
I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other ones and I do not know which one is flaring up. Having MG related symptoms today. I tried to do a bit of yard work but did not last long. Now am sitting in the house and am having "shaking" problems.
Thanks - I will ask my neurologist about it but I have a feeling that he does not know anything either. From what I understand, there are very few of us out there.
Hi
Best of luck with checking in with your neurologist.On another note, I noticed that you don't have a name other than community member/number. If you'd like to change your profile to a name, you can do so in its settings.
Smiles,
Gina Miller,
Team Member
I am sorry to hear that you are having trouble understanding which symptoms are coming from which disorder! That sounds very frustrating. As people with rare diseases it can be difficult to figure out what exactly is causing what, and it can also be difficult to find community resources for people like us. I'd recommend talking to your doctor about where to find support for your conditions. Sometimes they are more well-equipped to searching for community supports due to their connections in the medical field. I suffer from narcolepsy and was able to find community support through my medical provider at one point, when my therapist suggested that I ask them. I hope you are able to get the support and help you need! I actually wrote an article on rare diseases and comorbidities in which I question which condition is causing which symptoms. If you are interested in reading you can find it here: https://raredisease.net/living/symptoms-comorbidities Hope that is a little helpful! Warmest regards, Tatiana (raredisease.net Team Member)
