Diagnosis - New Symptoms?
Hello,
I am so thankful for this forum. Your replies have been a tremendous help.
I went to my neurology appointment today, and he immediately referred me to a bigger hospital, saying that my symptoms were too complex. I waited months for this appt. But I was smart, worked ahead, and had my next appointment scheduled for UC Davis in February.
I will explain my complex symptoms to see if this sounds familiar. Does anyone else experience this? In my best laymen's terms: I have triggerable slurred speech, breathing, and walking issues. What I mean by triggerable is that if I press on certain parts of my body, I can trigger a weak muscle. For example, I will develop slurred speech by gently pressing anywhere on my neck with one finger. If I continue pressing gently on my neck, my symptoms worsen. When I stop pressing, I have a rebound effect, and my breathing muscle begins to spasm, and I gag, cough, choke and have panting breaths for a short while. These symptoms resolve after a few minutes, but if I continue to press, my symptoms take longer to resolve.
I have other trigger spots that do the same thing. These include sticking my tongue out, or pressing gently on my diaphragm with one finger (or anywhere on my upper abs), or putting my hands above my head or behind my back- any one of these things will immediately trigger slurred speech and breathing issues.
Today I also learned that if I press my chin to my chest, the same thing happens. Also, walking at any length triggers slurred speech, breathing issues, and weak leg muscles.
I'm learning other triggers for my legs. Climbing stairs causes weakness in my legs and creates slurred speech and breathing issues. The same happens if I bring my knees high like I'm marching. I also learned today that trying to walk by putting one foot in front of the other causes leg weakness, and I look very uncoordinated...my legs eventually bring me down to my knees. Of course, slurred speech and breathing issues go along with it.
I appreciate your insight and sharing of your stories. It helps me to see myself and what I'm going through more clearly!
Kaye
I am so sorry that you are going through this!! While I myself have not experienced the triggerable slurred speech, breathing, and walking issues as you have described. Maybe others have and will respond! Hopefully you will get some answers at UC Davis in February. I know the waiting and not knowing can be frustrating. But hang in there, someone will figure it out!! Hugs to you!! Sally Farrier... Myasthenia-Gravis.com (team member). , My next appointment at UC Davis is February 9th. This is with an MG specialist. 😀 I'm hoping for the best possible outcome! I started to document everything. I also plan to create video journals of my gate and speech issues, per my primary's suggestion. My primary is also ordering a speech and swallow study (I went to a speech therapist in Oct/Nov, but after her initial eval, she suggested soft, chopped small, or pureed foods but didn't complete a study because of suspected MG, so we'll see what happens), OT, and a referral to a movement disorder clinic. The latter is because the last neurologist I saw said I might have a movement disorder instead of MG. Keeping my chin up! Slurring my words big time today! Can't walk very far but using a cane gives me a bit more mileage. Medical leave was extended for a couple of more months by my primary-not sure it's enough time to get through all of this...
Hugs!
Kaye, I am so glad you have a good primary DR. by your side. Hope the swallow study show something. Mine came back with consistent with myasthenia gravis diagnosis, it was a modified barium swallow study. Many of us especially if we are seronegative MG are told it is a movement disorder/ Functional Neurological Disorder & not MG. Keep your head held high and trust yourself... you know your own body better than anyone else including Dr.'s!! Hope you can get real answers before your medical leave runs out. Best wishes & hugs to you!! Sally Farrier Myasthenia-Gravis.com (Team member).
