Neurological symptoms/currently seeing doctors and trying to get diagnosis

[A136]

I am a 41 year old woman who has felt like I've been in very good health most of my life. Rarely see a doctor (prior lack of health insurance for years, for one. Now do have coverage). Don't take any medication and never have (save for occasional antibiotics, that sort of thing). I have been seeing a GP since June, 2014, when a whole host of symptoms began appearing. (Prior, only symptoms I ever really had was a very fast heart rate, felt like irregular beats. Went to ER over the years a few times for fast heart rate that came on suddenly, and Dr. said tachycardia. Diagnosed this summer by heart doctor with mild mitro valve prolapse (no leaking). On those ER visits when they checked my blood work in ER several times found very low potassium. My mitro valve prolapse probably caused the tachycardia. Heart Dr. said probably my heart will be just fine. He said just come in every year to check on heart.)  Blood work at GP showed low potassium and low vitamin D (never had low D before). So my symptoms started with numbness tingling, more tingling than numbness, like pins & needles w/out pain, in my extremities, especially left leg and left arm, bottoms of feet and wrists and hands. Worse upon wakening. Then late this summer, 2014 started having difficulty breathing, went into ER several times. Sensation is like diaphragm is 'paralyzed'. Feel better, able to breath after an hour or two of bed rest. Heart rate elevated. Also real trouble breathing at night. Have not had any dreams in years, said to be a feature of sleep apnea, wake up in night several times a week coughing, trying to breath. Not diagnosed w sleep apnea, but looked it up and tried sleeping w 2 thick pillows as per the suggestion i read online (previously only ever used one flat pillow) now sleep through night /out waking up coughing, and have dreams again, so maybe I do have sleep apnea. Now I have noticed what looks like weight loss in lower legs, appear bony on both sides, and now thighs beginning to visibly thin too. Now I feel like my limbs are very heavy, especially arms and shoulders, upper arms too, but even more forearms. Especially pronounced in left hand, forearm and fingers. Sometimes feel like left hand not working well, hard to grasp money, open zippers, have to try several times. I notice when I first wake up and start walking my left hand will be closed. I can easily open it, but, that's odd. Left thigh feels like it has no strength and am walking a little differently because of it. Shoulders and upper arms feel heavy too. Pushing a heavy grocery shopping cart seems to be a trigger for my breathing issues and makes me really tired. Feel like everything is heavier, even holding a cup or phone, etc. When I stand (because of feeling like I have less sensation in left thigh, my left leg sort of buckles forward w weight on that leg shifting down to calf. Right side more normal w weight on right side on both thigh/calf. About 4 months ago my soft palate suddenly lowered, almost touching tongue, whereas before always really high by top of roof of mouth. Also my tonsils which normally are quite full, appear now to have receded way back in throat and look about half the size. Now two months ago sudden blurry vision in left eye, and eyelid and brow have drooped quite a bit. My left pupil dilates and gets quite big, larger than the right one. Other symptoms probably unrelated but last few years have a very urgent bladder, also more constipation, never a problem before. Doctor sent me to a Gastroenterologist for swallowing study, they said fine, but found a mild hiatal hernia. Sending me for follow up w specialist in March. My GP sent me to a neurologist. He did a nerve conduction test. He asked me where I was having current numbness at the time of the visit. I said my left arm most pronounced. The nerve conduction test of my left arm showed some nerve damage. Follow up w neurologist had neck and brain mri (no contrast) both normal. My GP doctor tested me for myasthenia gravis. Results came back normal, but doctor just called me a few days ago to say lab didn't order full panel for MG as he requested, so he is ordering full panel for MG this week. I went to acupuncturist for urgent bladder. He asked based on needle test, where they put it in feet, ankle area if I had neuropathy as my reaction to procedure seemed to possibly indicate that. My neurologist was not very helpful and didn't think i needed further follow up. My GP agrees I do so he is looking for another neurologist who takes my insurance. When I was in the ER for the breathing they did a lung CT scan w contrast. The report sent to my Dr. said normal except for noted 'abnormalities on the adrenal glands. The doctor followed up by talking to radiology. the original radiologist who read the report not in. Another radiologist said he looked at the CT scan and looked normal to him, so I don't know. Am going to pick up those records and bring them to any further follow up appt. w either GP or a new neurologist. I feel more tired than usual, my muscles just feel tired, I would say my arms are more tired than my legs. It's tiring to go up and down stairs, get winded more easily. My limbs strangely feel like they have a greater range of motion, and like my joints are popping, the shoulder joints especially. My arms swing more at my side and legs bounce around a little more. I can also put my palms flat on the ground now and before could only touch ground w the tips of my fingers. Joints in fingers feel stiffer though. Repeated leg stretching does not cause me to get that normal pain sensation you get the next day, after an intense workout at the gym.. So what could this be? MS? (MRI clear, but did not do a contrast MRI..), Myasthenia Gravis, perhaps, ALS? Something else? I don't know.... Any thoughts? I feel like I'm suddenly going down hill fast w my health.

[Mel5056]

Was there any mention of Chiari Malformation or tonsilar herniation?  Chiari symptoms are a lot of what you listed here.  Just curious and another avenue to explore.  Wishing you all the best.

[A136]

Forgot to mention that difficulty swallowing has been a major issue, getting worse over last few months. Now jaw feels tired, so harder to chew, feel fatigued with a long meal. Sometimes I can eat a meal through, but many times can only eat a few bites, then start choking on food, have to cough. Feel like I can't breath and eat at the same time. I need to chew my food very well. Strangely, cooked cheese (like enchiladas) and mashed potatoes seem to be worse offenders, more than hard foods like crackers, chips. l often feel like food is stuck in throat. Sometimes cough up food.

[A136]

One more correction: Nerve conduction test tested whole left arm and showed nerve damage in the left forearm.

[A136]

Correction: Whoops, meant to type RIGHT eye is blurry with eyelid/brow drop. Left eye is the one though with the dilating larger pupil.