Medication exacerbating symptoms

[Steveb4262002]

Diagnosed Oct 2023 w gMG. Couldn’t chew swallow talk or hold my head up. Couldn’t expand my diaphram muscle hench shortness of breath. After plasmapheresis almost 5 months ago & Thymoma/Thymectomy 1 month ago, my only symptoms are shortness of breath & a small amount of leg weakness. I’ve had no problem with prednisone, mestinon, insulin, or any meds I’ve taken. Starting Soliris soon. I ve terrible tree pollen (Juniper) allergies & am even taking the antihistamine Claritin with no affect on gMG.

[sbee]

I have not been officially diagnosed, however I present with a lot of the symptoms and my Neurologist started me on Pyridostigmine 30mg 6x/ day. My bloodwork came back negative for the antibodies but I know that I can still have it. I am responding positively to the medication so I would think that would tell you that I most likely have some form of MG, right? Today was really rough because every single time I tried to stand up and walk anywhere, my legs were like jello, and I felt dizzy, and I was completely out of breath. I usually only experience this first thing in the morning and at night but today it was ALL day. It got to the point where my chest felt tight and my breathing was really shallow and I was very close to going to the ER. I ended up just falling asleep and now I can tell that my breathing is becoming shallow again. My neurologist has referred me to 3 Neuromuscular MG specialists and so far I have made 1 appointment but it is not until November 21st! One of the other specialists told me that they don’t have any new patient appointments left and they are working on setting up their calendars for November and December. I am still waiting for a call back from the 3rd referral.

Does anyone else deal with chest tightness and shortness of breath? Is this something that I should be taking more seriously and go to the ER? Thank you for any feedback.

[spacecadet]

I am triple sero-negative so I get it. Pyridostigmine helps me greatly so I do have a diagnosis of gMG, however I could possibly have MuSk or LEMS instead. Since the meds do help, we’re not rocking the boat yet. My biggest issues were leg and neck and arm weakness initially, with double vision coming later. Lucky for me, my physical therapist stated this could not be just neuropathy(I also have diabetes) so I got a second opinion ordered by my PCP. (My first neurologist never did catch on.) I went to the University of Cincinnati Gardner Institute where they have a wonderful intake program where a neurologist sees you and evaluates you within about a week with a referral. Based on his/her exam and the bloodwork and EMG tests you are then set up with the proper neurologist for your issue. My first EMG was not entirely positive for a neuromuscular issue, but thankfully the neuro then ordered a single-fiber EMG which showed very positive. You should get the single-fiber test if the first one is inconclusive, so be sure to ask for it. Perhaps there is a program at a nearby university affiliated medical center for you?

I was sick with this for quite a while and had no idea what was wrong with me. I went to my PCP numerous times with one issue after another, and I actually wound up in the hospital with low blood pressure when standing up which was caused by a neurological problem, but I tested negative for everything but neuropathy. Turns out MG can cause this issue. So I also take meds for that.

Yes I have shortness of breath, but only when standing up or lying down. I still can’t lay down to sleep. I do not however have chest tightness per se, but the breathlessness can make it feel heavy at times. My biggest problems remain neck and back pain and weakness when standing for more than about ten minutes. I also can’t talk while standing for long-so ridiculous! I definitely couldn’t manage at all without the meds! I do hope you can get an appointment before November-seems way too long to wait. Since the meds do help you, I’m confident the right neurologist will be able to tweak that and possibly come up with a different medication program for you to help with your chest tightness. Best of luck!!

[sbee]

This has been super helpful information. Thank you so much for responding to me. I actually live in Kansas City which apparently is the headquarters for the Myasthenia Gravis Association. They have 2 clinics here one of which is where I have the appointment on November 21st. The other clinic hasn’t called me back yet. I have been receiving assistance from the Executive Director of the MGA but there is only so much she can do.

I was wondering how long ago you were seen at the University of Cincinnati Gardner Institute? At this point, I know my neurologist will be willing to send a referral anywhere if it will get me evaluated sooner. The fact that you were seen within a week of them receiving a referral blew my mind! I have been trying to think of other places I could possibly try to get into like Mayo or John Hopkins. However, if you had a positive experience at the University of Cincinnati Gardner Institute and I can get in within the next 2 months or sooner, I am more than willing to travel. I am currently living with my parents and they see me steadily declining. I know they will take me anywhere so I can get help.

My current neurologist specializes in migraines but he has been so helpful in prescribing me the medication and listening to my suggestions of adjustments as to how I am reacting to the medication. Tonight is the first night that I am trying the 180mg ER to see if it helps me sleep better and have an easier morning. Crossing my fingers that this helps so that I am not crying myself to sleep every night because all of my muscles are cramping and twitching.

Anyway, thanks again and I appreciate any information you can provide about your experience at the University of Cincinnati Gardner Institute and what information I can provide my neurologist. 😊

[Aaron]

I definitely have the shortness of breath and chest tightness. My neurologist referred me to a pulmonologist and they were able to get me approved for a non invasive ventilator. It’s a huge help. I mostly just wear it at night, but there have been a few times I’ve had to wear it during the day and it’s kept me from going to the hospital. I’ve also had a couple surgical procedures and the vent was a necessity after anesthesia.

[Barbara E.]

I’ve encountered several medications that made my MG worse, including a too high dosage of pyridostigmine bromide (Mestinon). Since then, before starting any new medication, I and my doctors always check online to see if there’s any MG contraindications reported. It doesn’t catch everything, but helps!