Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Sorry for the length, especially since I'm sure people hate these kind of posts. I don't usually post on message boards (any type, I'm an introvert even on the web!), but I'm desperate at this point and don't know where to go next for help. I am very worrried at how most of my symptoms have become dramatically worse over the past month. Do the symptoms I list below sound like what any of you may have experienced with MG? I realize not all of the symptoms I list may be related, like my sciatic pain is likely from some sort of lumbar spine issue. However, I figure it can't hurt to include it in case it jogged some thoughts on other possibilities.
My doctor had refered me to a Opthamologist's office, but their office scheduled me with an Optomestrist who acted incredibly annoyed I was there when my visual acuity is nearly perfect, and refused to let me make another appointment with the actual opthamologist. My doctor was irritated at this, but said he couldn't dictate which doctor I saw there, and just said if I kept having the issue for another few months he'd consider sending me to Hershey or Hopkins to actually see a neruo-opthamologist. ("I know you've had symptoms getting progressively worse for over a year, but maybe it'll magically go away in the next few months so we don't need to bother doing a referal" So frustrating)
Sciatic Pain right leg - Started Feb '16, mostly less bothersome now. Sometimes I get a similar, but much lesser, pain in the left leg.
Calf Pain right leg - Started in August '16, once sciatic pain was starting to feel better. Intermittent. Feels like a cramp.
Nystagmus - Started in June '16, came on completely out of the blue with vertigo. Seen by my doctor at the time. Plainly evident to the eye by February 17, it was probably visible before that I just never checked it myself or had any other doctors look at it. Since it started I feel like my eyes jump around when I try to focus. It's purely horizontal from what I can tell. I've barely been able to read since it started.
Eye Strain Feeling - Comes and goes since June '16. Eyes just feel really tired and hard to keep open. No correlation with screen time that I can tell.
Vertigo & Dizziness - Started June & July '16. Followed by months of feeling slightly dizzy. Then starting around February it became a constant feeling like my head was bouncing back and forth, usually worsened after driving long distances or using the computer all day.
Nausea / Motion sickness while not moving - Off and on since June 2016 (likely related to nystagmus)
Facial spasms with eye and mouth on right side - Started very sporadically in November 2016, but has now become a daily occurence.
Shortness of Breath - Gradually worse since Summer 16, was very intermittent, now almost constant. I've had good pulse ox's, and I don't feel like it's the lungs itself. It feels more like I can't get the muscles to work right.
Throat tightness - Since Fall 16, somewhat relieved by Baclofen. Before I started the baclofen I was constantly clearing my throat because of the tightness/chocking sensation.
Tightness in Chest - Since summer 16, has slowly gotten worse. I can't laugh or talk loudly because of this.
Tightness in Nose - since summer 16 - constantly feels like i can't breathe through my nose
Difficulty talking because of breathlessness - Fall 16, intermittent but is now worse
Difficulty forming words - Summer 17 - Very slight, but feels my like my mouth is tight and has trouble moving
Difficulty swallowing - Since summer 16. Has mostly felt like very slow motility, where I have to try and force it down my throat slowly or swallow multiple times. Haven't really choked on anything. However, over the past month I've had a couple scary moments where I go to swallow and I can't get my tongue to work for a minute or two.
Weakness in triceps & shoulders - Feb 17, confirmed by neurologist. Fairly minor and was somewhat better a few months later at follow up. However, I have a lot of problems doing things which involve lifing my arms like combing my daughter's hair or trimming bushes around my house.
Worsened Posture - Have had bad posture for a while, but it's gotten considerably worse over last 3+ months. Feels like it's because my neck is weak and has a hard time holding my head up. Neuro gave me trigger point injections in May because she thought tightness was causing the problem, but they provided zero relief.
Twitches/Cramps - All over, started Fall 17, has gotten more often in past couple months. Seem to mostly be on right side. Not bothersome, just figured I'd mention it.
Suddness Faintness feeling - Just this past month, is occuring if I take a deep breath, talk a lot, or sometimes while just standing
Pain in right shoulder blade - Fall 16, usually goes along with shortness of breath
Exercise Intolerance - Fall 16. After exercise I would suddenly start feeling faint/lightheaded, short of breath, and my chest and shoulder blade would hurt. These symptoms last for days after exercise. Originally happened only after long exercise periods, but has gradually happened with less and less activity. Now I can't even mow half of my yard without feeling miserable afterwards. (I previously had been running 30+ miles a week, so I'm not out of shape)
Abnormal tests
d-dimer (summer 16)
hoffman's sign - positive summer 17 on left side (This could just be from stiff muscles and heightened reflexes)
romberg's test - positive (I sway, but don't fall)
VNG - indicated central issue
Normal tests/vitals:
Head MRI - No tumors, lesions, anneurysms, etc.
Chest MRI/CT (Summer 16 when it was only my eyes/leg/dizziness as symptoms because my d-dimer came back high and I have a family history or blood clots and strokes at a young age)
Head & Neck MRA (again because of d-dimer)
Stress Test,Echo, ECG (I never felt I had any cardio issues, but my GP wanted to rule this out)
Pulse, Pulse Ox, Blood Pressure. (Today I'm having hard time breathing, feeling faint, extreme chest tightness, yet my watch says my bpm has been between 60 and 70 all morning)
Breathing rate (I don't hyperventilate. If anything I hypoventilate because of the chest tightness)
Normal bloodwork:
Blood count, electrolytes, liver/kidney
Thyroid tests (TSH, T3, T4)
B12
Iron
ANA
ESR
CRP
Medicines tried; Lorazepam, valium, xanax, lyrica, cymbalta, flexeril, baclofen.
Baclofen is the only thing that's helped at all. I just recently read this is a key medicine for nystagmus, which might be why it helps a little. None of the anti axiety drugs had any effects on my symptoms.
I also tried vestibular therapy for over 3 months. The doctor and therapists there saw my nystagmus and my issue with saccades and tracking. Unfortunately the therapy didn't help much.
Doctors Seen
GP - Thought Menieres at first, then possible cardio/clot issue, then jumped to anxiety because of clean tests.
Cardio - (At GP's request) - no problems found
ENT - said it was central nervous system based on VNG so had no interest in seeing me again
Neuro - said my brain MRI was clean so she chould only treat symptoms
Optometrist - Eyes are structurally normal, no changes in visual accuity
Thank you to anybody who bothers to take the time to read this and offer any thoughts.
I can relate to lots of stuff you said. But you said it a lot better then I can. I kept thinking RA pain in my legs (mostly left, at night) and I kept going to my heart doctor for shortness of breath and being dizzy. I didn't think that much about a little droopy eye a couple years ago. Now, I can hardly open it. And my throat is really dry all the time and sore. But when I started getting head aches I knew something was really wrong because I never get head aches. Also, last year I started shaking in my hands and a lot in my chin. So a Nurologist gave me meds for shaking. But then the eye, the head aches, being dizzy, and on going leg pain that was sometimes keeping me home. So I went to the Nurologist and told him all the stuff and he could now see my eye so told me you have MG. But is going to take test and see for sure. Told me don't bother to go to the eye doctor, it's not your eye.
Anyway, weird symptoms that didn't seem to fit together just might after all.
Thanks for sharing your story so will. I appreciate it.
Peace
When I say classic symptoms I mean ptosis,double vision,blurred vision, difficulty chewing,slurred speech etc. Fortunately my GP suspected MG straight away.
Within one month, the symptoms had become generalized.
In the summer prior to these events I was experiencing muscle twitching.
In retrospect I believe I underwent a misdiagnosis at Christmas 2004, when i experienced intermittent bouts of vertigo, which was diagnosed as menieres by my GP. I am of the belief that this was the start of MG.
This vertigo disappeared and reappeared over the years and appeared when I had stress in my life.
I have often thought since dx " is this all in my mind.am I imagining this?"
Can I ask you if you have ever taken statins?
Regards
Andrew Nash
BouncyHead, most of what you describe is classic MG. It is so frustrating when you also have a list of symptoms that are possibly not related. Did your neurologist deny MG because of a clean brain MRI? I have a clean MRI (except for some spots of calcification, a normal thymus, and seronegative, but still have MG.) It is true, with MG, all you can do is treat the symptoms. You can have a normal oxygen level with difficulty in breathing (unless you are in an MG crisis), as oxygen isn't the issue, it is the breathing muscles. Most of the drugs you have listed are very bad for MG and can exacerbate the breathing problems. Is your neurologist willing to work with you with your MG? If not, perhaps find a better one. Good luck, and God bless. This is a real trial to deal with.