For the ladies

[Moonmark]

Hello to the ladies on this forum--

I have a few odd questions specific to our gender. anyone who has read my posts may recall that I have an 8 month or so history of off and on again muscle twitching, bad fatigue, muscle weakness, some mild atrophy in the hand, wrist, forearm area and off and on again excess saliva. negative EMG in June. two neuros say they do not think ALS at this time, but cannot rule out neuro condition that has not fully presented itself. I am still worried about ALS, which is why I continue to post here. my questions:

lately I have had off and on again sensations of not getting enough air. I also seem unable to tolerate wearing a bra with an underwire or those exercise/yoga tops with the built-in shelf bra. they are too constricting and seem to be affecting my ribcage/diaphragm area. anyone else experience this?

I am also unable to wear shoes with any type of heel, otherwise I have a lot of pain in my legs the next day, like I have been working out. I really don't wear heels , but I do like Dansko and other clogs and even these seem to be giving me trouble now. my shins are really sore from wearing clogs without backs yesterday.

and lastly, have any of you experienced urinary urgency/incontinence as a symptom? I cannot hold my pee for any length of time ( I mean for more than 10 minutes) and if I try, well, basically, I do not. I have had a lot of "accidents" lately while trying to make it to a bathroom. I have also had sudden incontinence when I have been upset. I also seem to go to the bathroom way more than anyone else around me. is anyone using pads? I am 44 years old and have one young daughter--didn't think I was ready for Depends yet.

well--just wondering if any of this sounds familiar to you. back to the neuro in a few weeks. maybe also to an MS specialist as the second neuro suggested exploring that route further. today, my left leg in particular is bad.

thanks for any thoughts--

Sandra

 

[daughter01]

I can't answer most of your questions but I got those Poise pads for my mom because it can be hard for her to get to the bathroom in time. They look like regular pads and help take the worry and embarrassment away. I was thinking a regular pad could probably be used--not sure how different they are.

 

[katmomma]

Sandra-
Ive had a little of the breathing issue during the day, but I'm attributing it to my pregnancy. Ive just read that respiratory problems start with symptoms like morning headaches (which Ive also been getting but I'm still trying to convince myself its from the pregnancy). I don't really wear heals either so I can't really answer that questions. The incontinence can be common with women who have given birth. I used to be a personal trainer and had a lot of clients that experienced that. Also, my aunt has that problem and it is because of her MS. I hope your problems go away soon.

 

[rose]

Sandra,

Your urinary incontinence problem is something specific, and that is a good thing as far as reaching a diagnosis. What I mean, is many of your other problems are vaguer in nature, and thus could be harder for your doctor to get a handle on.

The bladder is a different type of muscle than is typically affected by ALS. Even though ALS is a systemic disease, and can affect other functions than just motor, incontinence is not something PALS report happening early on, usually never.

I believe that with PLS it can be a feature as there is progression over many years.

It is something you should talk to your doctor about, and not try to tie into your other problems, it could be totally unrelated, but even if its not, let the doctors make the connection.

I have no experience with Depends or Poise, but from what I understand they are very advanced in controlling what could be embarrassing situations, and it certainly would be reasonable to give them a test drive Remember when you're in the store, that people don't know who you're purchasing them for, and they probably really don't care anyway.

As to the bras, yes I understand what you're describing. For proper fit most of the support should come from the band, rather than straps, so if you try larger band size, what will happen next is your shoulders will start bothering you, and you won't look as nice in clothes, so, that's not really a solution.

How about just wearing a form fitting cami (or two) under your clothes? The ones with a little lycra can help keep down the jiggle factor, without being as tight as a sports/yoga one... I have an extensive collection of matching sets of bras and panties, brands including the (now no longer in business) Rigby & Peller , Fantasie, etc, and it makes me sad to see them in my drawer, for the most part unworn now, but comfort is a heck of a lot more important! The reason I've mostly given them up is not because of the breathing, although I can breathe easier without one on, but rather I have difficulty reaching behind, and with the hooks, and also the strap cuts into my right shoulder to where it always feels like its twisted, drives me nuts!

There is an alternate school of thinking by some that bras don't prevent sag, that its just a myth propagated by the lingerie industry. But regardless of if they help or not, one less thing that makes your days better has got to be more important right now.

The Dansko clogs are a favorite of flight attendants to wear during flight, but I never went that route because they weigh so much! I didn't want to be hauling them around in my bag. Wearing them could be giving you more of a workout than you need right now. There is a brand, Aetrex, that makes some lightweight shoes, I buy that brand because they have the removable insole for orthotic use, but, the entire line offered by the company centers on foot/leg/back health. Also Crocks (or is it Crox?) are lightweight. There is a website "FootSmart" which has a huge inventory of shoes that are low stress on the body. The draw back is they have pretty steep shipping charges, however, they also discount the shoes, so its sort of a wash. You could always search there, and then try on locally.

Good luck with your upcoming appointment

 

[olly]

hi sandra.
i can totally relate to the bladder problems,it started about 3-4yrs ago and has slowly got worse(more so this past year)
i did do a thread on the pls forum a while back about this.
like yourself i get urgency and incontinance and now wear pads.
i get bladder spasms in bouts ,i am not too bad this week but spent the previous two weeks in a total nightmare.
when they are bad i can feel like i need to go to the toilet all the time but my bladder is usually empty,its like an uncomfortable aching pressure when your bursting to go.
the incontinance has come from the bladder and pelvic muscles getting weaker,sometimes for the first few seconds i dont realise i have had an accident.

bladder spasms/weakness is most associated with hsp,pls and ms.
i had a bladder test done about 3yrs ago but did not really show anything major then,you could ask about this at your next appointment but really its just to clarify the problems.
i am only just gone 42,its not something you are meant to deal with at our age but i can't grumble theres far worse others are dealing with.

i have still kept many of my high heels and strappy sandles plus many beautifull dressie clothes,though i never wear them(heels i can't)or go anywhere but can not part with them.
i am keeping my heels for when i am wheelchair bound,they will look nice but i wont have to walk in them.

as for bra's,i always find them uncomfortable and prefer to go without(in the private at home):grin:

 

[BethU]

Sandra, I developed problems wearing heels in my 50s, long before ALS, but I have a friend in her 80s who still wears spikes. (Never say die!) But she never walks far. I don't associate it with ALS, but I do hate the sturdy shoes I have to wear now with my brace. I wouldn't think it really has anything to do with ALS.

As for incontinence, I had a little stress incontinence before ALS, but it's gone away since I developed Lou Gehrig's, which is the only good thing I've experienced with this disease. It may be related to less fluid intake, or may just be a temporary thing. It is common in women who have had natural childbirth, and in women who have had hysterectormies (me). In the latter case, there is simply more room in the abdomen, and organs shift around, and the bladder may be tipped from its normal position. In the former, the muscles aren't as tight, and again, internal organs can shift position.

As Rose said, those little panty liners work very well, and eliminate the worry when you leave the house. There are surgeries that can help ... one is major and complicated, one is minor and doesn't require cutting (they prop the bladder back into its correct position with silicone injections) ... but if it's a small problem in your life, little pads are easier when you're out and about.

 

[olly]

i did ask about surgery but when these problems are caused from spasms due to a neurological disease its not an option.

sandra,like beth said it could be caused by other things so maybe some bladder tests will help.

 

[rose]

How about all of those commercials for the medication to calm down the "gotta go" urge? I can't recall the name, but the pharmaceutical advertises pretty heavily.

What you're experiencing (Sandra) could be a combination of irritable bladder, which is common I think, coupled with having given birth. Most women (who've delivered vaginally, especially) experience at least a little leakage from time to time with sneezing, etc,

My daughter was born with a kidney defect. She was missing a valve in her ureter between the bladder and kidney, so she had reflux and would get terrible kidney infections. as once urine gets into the bladder its no longer sterile, but then it would flow back into her kidney. It was eventually was repaired surgically, but for the first few years of her life, (after her doctors finally figured out what was wrong!) she took an antibiotic and also a medication like the one I referred to which is being marketed now, daily. I remember one time I was standing in the bathroom, filling a glass so I could give her her pills (she could take pills by age 2, quite impressive, right? ) Anyway, you know how its so easy operate on autopilot? I fill the glass, I've got the pills in my hand, and so I swallowed them. It was an oops moment.

 

[Moonmark]

Hello,

thank you all for your thoughtful replies. I am glad I titled this "for the ladies," otherwise I am sure there would be LOTS of comments (read: fantasies) from the fellows after reading about Rose and Caroline going bra-less.:lol: as for me, that is fine around the house, but I am on the well-endowed side and need a bra when I am out and about. I think I just need to stick to bras that do not have an underwire now.

the overactive bladder thing has definitely worsened since this whole muscle weirdness started. after having a natural childbirth, I did leak a little with bad coughing/sneezing, but never outright incontinence. I am already using just regular pantyliners that one would use for a period. it's weird. I have also have had episodes where I feel like I have to pee, but I cannot. It feels like my bladder is retaining urine or something. Caroline-- what is hsp?

It is comforting to hear, however, that this is not typically something associated with ALS.

In any event, the primary care doc is going to see me about the breathing thing because I have had a chronic cough for some time now. not sure if it is related to everything else.

Rose, I will check out that other lightweight clog manufacturer. I do love my clogs.

anyway, thanks again.

Sandra

 

[hopingforcure]

Rose,
Happy birthday pretty friend..
My son had the same issue when he was young. He could swallow pills at an early age, (we have amazing kids).. I can relate to auto-pilot, too funny, visualized you taking the pills, and then wondering if your daughter felt better. LOL... My son who is now fourteen always takes his temperature whenever he feels even a little under the weather. We have about 10 fancy thermometers in the house. We have one's that talk, those that test the forehead, those that are digital, blinking, beeping, vibrating, you name it ,everything but old-fashioned mercury. Well when he was younger and wanted to stay home from school, he would take his temperature until he had a fever, if you did not show, well maybe the next one. Had to share that story, thought you guys would laugh.

 

[olly]

sandra,your bladder problems do sound just like mine.
its only this year that outright incontinance has started,that is even when i dont feel a need to go but its too late to make it to the bathroom.
hsp is hereditory spastic paralysis,a umn disease that mainly effects just the waist down.

 

[hopingforcure]

Sandra and Olly,
I have the same issue as Caroline, Sounds just like what I deal with.