u/esper_terra

Hey guys, I am getting ready to start jumping rope (it's coming in the mail today!) but I have a problem. I get urinary incontinence when I jump (and when I do a lot of other things too, like walking). It's been a lifelong muscle weakness problem that I am currently seeing a neurologist for (I am 44 now!). I have a naturally weak core. My legs and arms are weak too and fatigue very easily. I am wanting to get stronger but I will definitely be easing into this. Anyone here had/have incontinence when jumping and can offer any tips (besides the obvious of wearing some protection)? Did yours get better over time, etc? Thank you!

I went through a partial nerve conduction and emg earlier at the hospital. I got through the needle part but didn't get through the shock part.

They kept shocking my neck? He was trying to check my shoulder he said but they kept shocking my neck over and over and it got so intense I had to stop for a moment.

The doctor said everything was in normal limits and acted like he had enough info. He even said anymore shocks would be "extra". Come to find out when I checked my results later it said that they only had partial results and didn't get to finish the test because I couldn't tolerate it!

I felt like he was just impatient and wanted to move on!

I'm upset. I felt they rushed and if I could have rested a bit I could have gotten through the rest of it. I feel like the doctor wasn't listening.

And I am so confused as to why they were shocking my neck (making my head jerk to the side over and over) instead of shocking my leg muscles or even my arms????

And no answers from this. I feel defeated. I asked about genetic testing and he said it would be up to my doctor but that it's really hard to diagnose from genetic testing.

Some days I feel like what is the point of doing this.

Some notes about me:

-Lifelong muscle weakness and fatigue, gotten worse the last few years (I'm 44 now) have immense difficult walking up stairs or hills or with exercising. Have muscle weakness when I raise my arms over my head and some facial weakness (can't smile fully).

-My mother had profound muscle weakness her whole life.

- My neurologist suspects congenital myopathy or myasthenia but ck is normal and now nerve conduction is normal. Partial emg was apparently normal.

- Waiting on fshd genetic testing.

- Would like to get full genetic testing one day

Did I mess up? How helpful is the shock part of the test? Should I try again one day? (If insurance will even cover that) 😭

Guess I'm just writing this to vent mostly. But I welcome any experiences or knowledge anyone may have.

I went through a partial nerve conduction and emg earlier at the hospital. I got through the needle part but didn't get through the shock part.

They kept shocking my neck? He was trying to check my shoulder he said but they kept shocking my neck over and over and it got so intense I had to stop for a moment.

The doctor said everything was in normal limits and acted like he had enough info. He even said anymore shocks would be "extra". Come to find out when I checked my results later it said that they only had partial results and didn't get to finish the test because I couldn't tolerate it!

I felt like he was just impatient and wanted to move on!

I'm upset. I felt they rushed and if I could have rested a bit I could have gotten through the rest of it. I feel like the doctor wasn't listening.

And I am so confused as to why they were shocking my neck (making my head jerk to the side over and over) instead of shocking my leg muscles or even my arms????

And no answers from this. I feel defeated. I asked about genetic testing and he said it would be up to my doctor but that it's really hard to diagnose from genetic testing.

Some days I feel like what is the point of doing this.

Some notes about me:

-Lifelong muscle weakness and fatigue, gotten worse the last few years (I'm 44 now) have immense difficult walking up stairs or hills or with exercising. Have muscle weakness when I raise my arms over my head and some facial weakness (can't smile fully).

-My mother had profound muscle weakness her whole life.

- My neurologist suspects congenital myopathy or myasthenia but ck is normal and now nerve conduction is normal. Partial emg was apparently normal.

- Waiting on fshd genetic testing but that'll probably be normal like everything else. (Just feeling so cynical lately, sorry)

- Would like to get full genetic testing one day

Did I mess up? How helpful is the shock part of the test? Should I try again one day? (If insurance will even cover that) 😭

Guess I'm just writing this to vent mostly. But I welcome any experiences or knowledge anyone may have.

I am scheduled to get an upright MRI of my brain and spine and also want to request no contrast. The doctor wants to rule out MS. I have previous images of my brain (some with contrast) and the lesions I have. Will upright and no contrast dye be sufficient to specifically rule out MS? I read that the machine may not be as good as catching new and small lesions. But they should be able to see bigger ones and spot the previous ones when comparing it to old images, correct? Google gives me wildly different answers. Any insight?

I've had lifelong weakness and its gotten worse as I have gotten older (44 now). I am being worked up by neurology. So far I've only gotten 3 blood tests. CK was normal, lactic acid normal and Adolase was low. I understand that high adolase can indicate a muscle disease but apparently low adolase can as well. I am going for an MRI soon and nerve conduction, but was wondering if anyone has any experience with low adolase?

My aldolase came back low. Haven't heard from the doctor yet but apparently it can be interpreted as benign or possibly as a sign of muscle wasting. Has anyone had this test and it came back low?

Those of you who know your eyes don't close completely during sleep, how did you find out? Did you get someone to observe you while sleeping, or did you have a test done?

I have had chronic dry eyes for a long time that might be damaging my eyes and am trying to find the cause. I wake up with them extremely gritty, painful and hard to open. My optometrist said I definitely have signs of chronic dry eyes but suggested I try OTC drops and sent me on my way. So far they aren't helping.

If you have this issue what have you done to remedy it? Thank you.

I've had issues with dry eyes for years. My ENT suspected I had Sjogren's because I am dry everywhere and have joint pain. But a rheumatologist brushed me off when she found out I wore contacts. She said "you can't have Sjogrens and wear contacts" which I now know is BS. Yes I wear contacts but I do have issues wearing them quite often. I do have an autoimmune disease already and recently found out that I have strong genes towards autoimmunity and Sjogren's in particular.

My eyes tear, look inflamed at times and I seem to have new vessels forming. The worst is when I wake up from sleep, my eyes are painful, gritty and hard to keep open for awhile. I don't sleep in my contacts and I give my eyes breaks from them. I don't wear them all the time. I might be sleeping with my eyes not completely shut at night, but I am not sure. I may try a weighted mask.

Recently I saw a an eye doctor who told me that he can definitely see that I have chronic dry eye, but just gave me the names of couple of OTC drops to try and sent me on my way. I tried one of them and I don't feel any difference. I will try the other he suggested but if that doesn't work what then? Do I call him (optometrist) and ask to be seen further or do I ask for a referral to an Ophthalmologist?

I am worried because I feel like the chronic dry eyes are damaging my eyes. Fortunately the eye doctor said my corneas look good. What would be the next best step? I am not really one to be keen on getting prescriptions but in this case I am open to the possibility if it will ease inflammation or possible damage. Thanks.

Throughout my childhood I was active. But my muscles have always been weak. I struggled with riding a bike, running, I couldn’t do pull-ups even though the rest of my class could, I struggled with sit-ups and would release my bladder when I did them, couldn’t climb the rope in PE and couldn’t jump on a trampoline without releasing my bladder either. I also have had lifelong chronic constipation.

Fast forward to adulthood, I’m now 43. I’ve dealt with muscle weakness still for years but it seems to be getting progressively worse. I struggle with steps and hills, even just slight inclines. Getting off the floor is difficult because my knees and hips feel like they will give out sometimes and I also injure myself easily. One of my knees buckles frequently.

I also have a crooked/asymmetrical smile and can't open my mouth wide. An orthodontist once said my muscles go downward and be couldn't help me. I've had previous work done but it didn't help. It's gotten worse over time I think.

The other part of the story is that my mom had profound muscle weakness throughout her life and became disabled at a young age and bedridden quite quickly once she started injuring herself by falling. She passed away from ovarian cancer so I can’t genetically test her but now I wonder if she had a neuromuscular disease of some sort.

My question, does this sound neuromuscular, or like something else? What tests might you suggest with finding an answer?

*** I am seeing a neurologist with a sub specialty in neuromuscular disorders in July, not asking for a diagnosis here***

How can I prepare for my appointment? Should I bring a diary of symptoms? Photos from my childhood? (my muscles always looked skinny and weak), should I bring a list of symptoms? I'm worried about underpreparing but also over preparing. What do doctors like patients to do? Just talk?

I'm interesting in genetic screening as well, and am going to look into that, as I have had some genes come up for muscular dystrophy through my own research but they might be clinically irrelevant. Not sure. But don't most people who have muscular dystrophy get diagnosed during childhood or are in a wheelchair?

Thanks everyone for your input. The main reason why I'm searching for an answer right now is because I'm scared about my future mobility. Hopefully I can get some help with strengthening my muscles.

Info about me:

130 lbs 5'5 female

I eat mainly unprocessed foods, meat and low carb vegetables and berries, healthy fats.

Current main health issues:

Hashimotos, migraines, IBS-C, mild iron deficiency with anemia but hematologist says it would not be causing all of these issues I'm having

Had cardio workup and wore a monitor and they came back ok

Physical is up to date

Issue has been lifelong and getting progressively worse.