Hello everybody,

My name is Adam, I'm 26 and, over the last two months, have been suffering from symptoms in-line with a diagnosis of Myasthenia Gravis. I've had an appointment scheduled with a neurologist for four weeks now and it is finally coming on Wednesday. Bloodwork from my primary care indicated the diagnosis was likely, but I am awaiting confirmation from a neurologist.

My sister, a pharmacist, was doing some research on the disease and discovered a lengthy list of medications that can onset the disease in someone predisposed to the disease. Included on the list was a blood pressure medicine I began taking approximately 2 weeks before the onset of my symptoms. I immediately stopped taking the medication and contacted my cardiologist, who advised me to stop, as well. I have an appointment with her on the same day as the neurologist.

Based on the documentation my sister found, once the medication has been stopped, the symptoms should begin to subside after about two weeks. My last dosage of the medicine was this past Saturday morning (8/18), so I've only been off a week, however, it seems my symptoms are getting worse. Does anyone have any experience with an onset of MG caused by a medication and the time it took for your symptoms to subside.

The first indication of something wrong was the first week of July, when I began having blurriness and double vision. After about a week, I decided to have an eye exam and found I have 20/20 vision. On the same day as my eye exam, I began having ptosis of my left eye. The following week, the ptosis on my left eye subsided, but began on my right eye, where it has remained since.

Towards the beginning of August, I began experiencing some slight weakness in my cheeks (swishing water around while brushing my teeth, holding air/water in my mouth). On 8/18, I began noticing more severe weakness in my cheeks, as well as fatigue while chewing. This has been getting progressively worse since then. In addition, since Wednesday 8/22, I've been experiencing intermittent issues with speaking, unable to physically get words out at some points and unable to pronounce certain words correctly.

I've been trying really hard to deal with the symptoms, but it's been very depressing. I know I might be expecting too much for the symptoms to subside quickly, but it's hard when I feel so hopeless. I'm hoping the appointment with the neurologist will start me on the road to dealing with the symptoms, if they don't go away (for now), but it's been such a long, stressful wait already.

Any insight or advice anyone may have would be greatly appreciated. (And sorry for being so long-winded! )

Hi Adam

Don´t worry about writing too much. It´s good you include details.
Yes and Yes are the answers from me. I can get severe exacerbations with antibiotics and sedatives. Symptoms clear up significantly after 2 weeks without the drug and it is very noticeable. But not everyone reacts the same to any drug on a list. So your drug may be ´safe´for you even if you have MG, and if you are getting worse by not taking it go back to your doctor. Maybe there is an alternative drug you could be taking for your other condition.

Good luck with sorting it out asap

Anacrusis

Hi, Adam. I'm a little confused. I hope other members read the following and chime in.

Myasthenia gravis is and autoimmune disease. That means it's caused by the immune system mistakenly attacking some healthy part of the body. In MG, muscle weakness is caused by the immune system attacking the neuromuscular junctions.

There are other things that can cause myasthenic symptoms--that is, they can cause symptoms of muscle weakness, but without the involvement of the immune system (for example certain drugs, or certain toxic substances). These might cause "myasthenia" (muscle weakness) but not "myasthenia gravis" (autoimmune muscle weakness).

So I'm not sure what your sister discovered. If she's talking about drugs that cause muscles weakness (but not a malfunction of the immune system), then it would make sense for the symptoms to go away when you stop taking the drug.

But you said you had bloodwork that your doctor thinks means myasthenia gravis. The only blood test I know of that indicates myasthenia gravis is a test for the antibodies that the immune system is directing against the neuromuscular junction. This is called the AChR antibody test (it stands for Acetylchoine Receptor). If your AChR test was positive, you have myasthenia gravis. MG can certainly be made worse by particular drugs, but it's not likely to go away completely when you stop taking them.

The symptoms you describe seem to be focused on the bulbar muscle-group. That should help your neurologist figure out what's going on.


I hope this isn't just confusing you more. I'm trying to help you figure out what to ask the neurologist. Please don't hesitate to ask questions here. We all want to help.

One more thing: MG is unpredictable. It can plateau for a long time and then suddenly tank. If it gets suddenly worse, and you have trouble breathing or find you can't swallow, go to the ER or call 911. These are medical emergencies. Have a card with an explanation written on it in case you can't talk. There are very effective emergency treatments for a myasthenic crisis.

Abby

Abby,

There are some drugs that can "unmask" previously dormant MG. It's pretty scary stuff and I don't know enough about it to know if discontinuing the drug will make the symptoms remit or not.

When I had the reboot, I was given one of those meds as a prophylactic antibiotic when my immune system was still down. OMG, within 30 minutes I was in a severe flare. It went THAT fast. Needless to say, I will NEVER take that med again.

Adam, try not to worry too much. The neurologist will be able to offer much more insight than we can.

Good luck.

Which drugs are we talking about?
What blood pressure drugs?

Thank you for your input.

I'm not able to post a link (apparently I'm too new! ), but the information comes off of a document from the University of Illinois at Chicago. It indicates there are various drug categories that should be avoided. Included in this list is some antihypertensive drugs in the beta-blocker and calcium channel blocker class. The drug I'm on is Amlodipine, a calcium channel blocker.

The thought that I could have MG and it being onset by this medication is obviously just a theory at this point without confirmation by my neurologist. However, the symptoms and chain of events, based on our research, seem to be in line. Then again, that's also why I'm here to get the opinion of people who may have experience, as well!

Adam

I've know drugs can make the symptoms worse or cause someone in remission to have symptoms. Its one of the issues I'm facing in trying to treat MG and Stiff Persons at the same time. As far as drugs causing the condition, I don't know if that's likely. Its probable that the list of drugs your sister found are the ones we aren't supposed to take as they worsen our symptoms.

I guess I'm not trying to infer that the drug caused the disease, per se, but perhaps it had remained stagnant in my body (or perhaps manifesting in smaller, less noticeable ways that I may have ignored or just thought was "normal") and was brought out more substantially due to this medication. Again, this is all theoretical, to a degree, because I'm not entirely sure what's going on with my body.