 |
|
| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
| Reply |
|
|
Thread Tools | Display Modes |
12-14-2013, 03:19 PM
|
#1 | ||
|
|||
|
Member
|
Hi friends! I am having progressive distal weakness in conjunction with my bulbar symptoms. The bulbar symptoms fluctuate more than my distal weakness, i just want to know if anyone has this issue? I feel like my ankle, and calves are weak along with my forearms and hands. I am getting tingling as well, which I've been told isn't present with MG. Thank you for any input.
|
||
|
 Reply With Quote
|
|
12-16-2013, 01:39 PM
|
#2 | ||
|
|||
|
Member
|
I am still technically a mystery.. but I had weakness ALL over initially.. distal included, where I couldn't even hold a spoon, pen etc.. couldn't suck through a straw etc.. I also get numbness tingling on my most affected areas.. After IVIG i got my life back where I could smile, hold a pen again and swallow again... they all fluctuate all the time.. If i have a cold or have allergies where I have to clear my throat often,, by the end of the day I can't hardly swallow anything until I completely rest my bulbar muscles as much as possble for 15-20 minutes..
They did an epidermal nerve/skin biopsy on me and it confirmed I had severe small fiber neuropathy.(I mean my findings were crazy abnormal, which was shocking to me, as I always wonder if the sensory stuff is in my mind)!. which I guess explains my tingling/numbness, as my NCV and EMG's are always normal... (and i've had a ton the past 3 years).. which they tell me all points to autoimmune issues... I also have slightf diffuse muscle wasting, which is why i've always put LEMS pretty high on my list, as it can have muscle wasting, small fiber neuropathy and the bulbar symptoms with it.. otherwise, no one really can figure me out! Another thing that points to LEMS for me is first thing in the morning if my IVIG is wearing off I can't grab my phone blink my eyelids for the first few minutes of being awake.. I Have to try blinking and making fists, taking big breaths a few times before my muscles kick in.. I drink coffee which helps tremendously.. and then my muscles get weaker again later on in the day.. all dramatically improved with IVIG.. Hope this helps!!! are you seropositive MG? Quote:
|
||
|
|
Reply With Quote
|
|
12-19-2013, 01:21 PM
|
#3 | ||
|
|||
|
Member
|
I've always been positive for the binding antibody since 2008, but it depends on which doctor (except for my normal neuro) and which day it is if the other doctors believe I have it. I started with bulbar, now I am having eye issues, coordination in my opinion, and fatigue that is so bad, I have to switch arms when I am driving and concentrate when I am walking. I'm very weak. It's funny you brought up the small fiber neuropathy, I am being tested for that in 4 weeks through a biopsy. I am seeing a movement disorder specialist at the University of Florida (6 month wait) to address my concerns of coordination or ataxia. I asked my neuro if I could try IVIG to see if it helps, but he wants to do the biopsy first. He thinks I have a couple of autoimmune things going on and I may be an atypical MS case since I don't have lesions right now. For 27, I feel 70. I feel trapped in my body and I am losing the ability to control it effectively. Work days kill me, and 3 eyes in, my entire body is worse. My forearms getting every tried just from typing and sometimes my hands cramp. MRIs and MRAs recently were clean again, which is good, but SFEMG was normal. Balance testing said they could tell I have issues but aren't 100 sure what the issue is because my eyes aren't working properly (slight nystagmus in central gaze, and convergence issues). It seems no one can figure out if this is MG or something else. Mestinon is not a great help to me and my doc knows that. I am willing to try IVIG or something. If it doesn't work, fine. I just don't want to give up and I'm pretty much done looking for other opinions. Univiersity of Miami wants me to see a neuro there and I haven't even bothered making the appt. This would be my 6th neuro I've seen since this flare or episode in April. My current neuro is awesome, but we both agree I have a couple of things going on, just don't know what.
Quote:
|
||
|
|
Reply With Quote
|
|
12-20-2013, 06:21 AM
|
#4 | ||
|
|||
|
Member
|
You sound so similar to myself..My issues started when i was 30 (now i'm 33).. but I couldn't function at all.. right before I crashed and ended up in the hospital inpatient for a week just standing upright was nearly impossible.. holding my arms up to my computer at work for a few minutes fatigued my shoulders to the point of shaking uncomfortably.. my last week of work before I crashed 3 hours was too much and everyone told me how awful I looked the entire time!
It's good your neuro understands that more than one thing can be causing your symptoms.. it seems to be hard for many dr's to think outside the box.. to think that someone can be an atypical case of one thing or multiple issues causing the symptoms.. so that part is good at least! I have issues with my vision when IVIG is running out that if I focus on something and then look at a different depth my eyes won't focus on that for a bit... it's awful.. mild double vision and just odd vision as well.. IVIG for me was my life saver... sometimes I forget how awful I was, until I recount my story or my family tells me what a difference they see.... I'm NO where near my old surfing, hiking, running skiing self.. but I'll take it compared to pre IVIG post sick self! I hope they let you try IVIG, or you find some answers witih good solutions! Keep me updated! Oh, and for me my coordination can get bad when I get weak.. I even almost get a tremor.. but then it resolves with IVIG as well.. none of the dr's understand it all either! It would be nice mentally to have more answers that's for sure! |
||
|
|
Reply With Quote
|
| Reply |
|
|
Similar Threads
|
||||
| Thread | Forum | |||
| Eating my way to weakness and other issues | Myasthenia Gravis | |||
| RSD / CRPS II Auditory Issues / Sensory Issues | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
| fatigue, weakness, nerve + circulation issues.. any ideas? | General Health Conditions & Rare Disorders | |||
| Back issues, ankle weakness, but no major pain?? | Spinal Disorders & Back Pain | |||
| New to forum, lots of sensory issues | Multiple Sclerosis | |||
Distal Weakness/ Sensory Issues
Linear Mode
