[Silverlady]

You all who know me know the issues I've been having with breaks. One of the breaks is an H shape accross my sacrum at S3 and back up beside one of my sacroilliac joints. Pain is really unbearable at times. Other times I am in lots of pain but I can tolerate it.

I've been taking the Forteo Injections for bone building like the ones Liza Jane was taking. That's all that's new in meds.

Things have happended since April when all the breaks started. I've lost the big toenail on my right foot and it's about 1/2 grown back out. So far looks healthy. The one on the left turned purple and finally fell off all in one piece last night. No nail under it at this point. I quiver more, my tremor is worse, the hot liquid fire running down the back of my thighs and around my buttocks is now well established. Then the strangest thing...I was standing at the table braced sorta, waiting for him to give me the evening Forteo shot. At the exact time he poked me with the needle, I felt this gush of moisture in my underpants. Then I realized I was wet down both legs and into the floor. I had no feeling of needing to go, I'd been about 10 minutes prior. I didn't even know I'd gone until I saw the puddle in the floor. First time this has happened. Never been a problem before. I do admit to having to go more frequently now but I've never had an accident or even a near accident.

I have very little sensation other than soreness in the whole groin, vaginal and rectal area.

My first thought is caudial equina (I know I'm not spelling that right) because of the break, but I called the neuro's office and was told I needed to see my PCP to rule out infections and other problems first.

The earliest I could see my PCP is tomorrow at 2:00 so I know nothing. I'm getting up there in years 63 this year. But I'm a young 63. Is this something that naturally happen to women and Men after a certain age or is it more omnious. My entire body changed when all those breaks happened.

Billye

[fanfaire]

Wow, I don't know if I'll be any help because I know nothing about osteoporosis (that's what's causing your breaks, right?). So please disregard whatever I say if it doesn't apply.

But I've had toenails turn purple or black for no reason, no injury or anything, in the past two years. Luckily, mine have grown back eventually. May be completely unrelated to what you're experiencing, but just thought I'd throw that out there.

Is it possible the incontinence was autonomic neuropathy? I unfortunately have had incontinence off and on since 1998 when I was 34, usually in response to coughing, sneezing or laughing. I don't know the cause of mine, but it's one of the things I need to quit being embarrassed about and ask the Mayo docs about.

I've not heard about the condition you are mentioning and hope someone here can enlighten us. Never hurts to learn something new.

Hope it was an isolated incident.

fanfaire

[shiney sue]

You spelled it right,or it's also called Spinal Stenonsis,a
narrowing of Spinal Cord.. Most of us well one's a little older
has Stenonsis in parts of our bodies..My Aunt has SS and has
a problem with this on occassion..Toenails very common with
PN people. Speak up a Urololist helped Bob,but please bring it up to
Dr. tommorow.. Sue

[kebsa]

The incontinence could be do to breaks in the area you describe but as you say you have diminished sensation in the gental region i wonder if it is MS related. One of my earlies symptoms from MS even pre Dx was urunary urgency and the occassional accident. A lesion in the scaral region can cause the symptoms you describe but as your neuro says, the fisrt thing is to rule out simple problems such as urinary tract infections.
Try not to stress to much about it, i know that it is embaressing but it can be managed. here in Australia we have Continence Nurses, RN's with specialist knowledge about dx and treating urinary and bowel incontinence- they are excellent when it comes to management strategies. Its worth seeing if you can get access to one for some advice- you MS society may be able to point you in the right direction.
regards
Karen

[Silverlady]

fanfaire,
it's heartening to know that I may eventually be able to have pink tonails and sandals again. , I too thought of the autonomic feature of the neuropathy since I've been experiencing more urgency of the bladder in the recent few months. But I haven't mentioned it to the neuro. The breaks and my bad lower back bother me more as far as losing control. The total loss of any sensation in the rectal/vaginal area happened when the sacral fractures occurred. The feeling finally returned except for the inner (vagina and rectum) area. But the fractures aren't healed. The doctor told me 6 months to heal all of this (if I'm lucky).

Thanks Sue, hope Bob is better. I"m thinking about you.

kebsa,
I have been tested in the beginning for MS. I am negative for that. I have Sjogren's Syndrome which causes my neuropathy and I also have Rheumatoid Arthritis. Thank you for all of that info tho because every bit of info we get on this forum related to neuropathy is something to be treasured. I'm not extemely stressed from the accident. I just bought me some Attends (pads for the accidents). We call them my "knickers". I also doubled up on the Kegal exercises. I just am concerned that there is being damage done to my nerves in that area that may be permanent. I have a follow up appt. with the neuro after Christmas and if this is continuing, it will be the first thing we address.

I do appreciate all your inputs. I finally have an appt. at the UT Southwestern Metabolic Bone Clinic and with the doctor that Scarlett (Cathie) recommended. I have seen him before, but it's been about 15 years.

Thanks for all the inputs.
Billye

[cyclelops]

If you don't have a history of 'stress incontinence', which are those little accidents with sneezing, coughing or laughing, it is unlikely that it would manifest with a big gush unprovoked by bearing down stress. Stress incontinence can hit any female after child bearing and doesn't necessarily relate to aging. Young women can even get the problem.

Autonomic neuropathy can present with continence issues, however, one big gush just doesn't sound typical. If you haven't had other leakage issues, a sudden gush seems to be an odd manifestation.

It sounds like your bladder was full and you had no idea it was full, it sounds like the gush was posturally related and that the bladder sphincter was not up to holding back that amount of urine. If you had no sensation that your bladder was full, that is a concern. If you felt you had to 'go' and were just waiting to get to the bathroom that is a different issue.

I can see how you came up with cauda equina, and it isn't off base given your lower back issues. It is always worrisome when things like that happen, and one usually is most concerned with spinal cord compression, and those are urgent situations.

I think a good going over from a doc is in order.

[rose]

Can be urge incontinence due to some spinal cord problem, including MS, B12 deficiency, etc.

rose

[Kathi49]

Silverlady,

I don't know if this applies but I also have L4/L5 and S1 issues, nerve damage and even an old fracture in my coccyx. I had terrible "sit pain" for the longest time. And I also thought I might have cauda equina but I didn't. To make an extremely long story short I eventually saw a Urogynecologist and that was after lumbar PT through me into a tizzy! I also have a cystocele and rectocele too so between he and my spinal PM, I went into pelvic floor PT. It was the best thing I have ever done. It helped with the incontinence, even though that was minor. More than anything it helped with the levator ani muscles, piriformis muscle and yes, I had spasms everywhere. Word of caution though...watch those Kegel exercises. I was doing them too, before I went into PT, and found out that that was the worst thing I could be doing since everything was already in a spasm. I was trying to strengthen when instead I should have been having those spasms released...which she did. Ask your Neuro about it since I KNOW I have some nerve damage from the spinal issues. Just never realized how all of that interacts and comes together in the pelvic floor. It was a real education!!! And the whole time I was thinking it was something VERY seriously wrong. Just 3 visits (although I went for two months) and I was cured...at least from the pelvic floor pain.

[Silverlady]

Well, saw the doctor today and he is sending me to a Gynocologist. We will see what she says and where we go from here.

I had another incidence of this loss of bladder control today. This one was when I stood up from the shower stool to put the towel up. Had to take another shower.

I'm just incredibly tired tonight.

I am really leaning to thinking that the issues are spinal related. Just too sudden to be stress incontinence. I don't lose control when I cough or sneeze.

It's going to be another round of doctor's I fear.

Billye

[kebsa]

It does sound like it may be more related to nerve, spinal issues than simple stress incontinence but that can still be managed. There are electrical nerve stimulators that can help some individuals, various medications etc. but as you are doing, getting proper assessment is the 1st step.
I used to get dreadful urge incontinence and had frequent accidents, mine is ms related and i was put on oxybutinin and that has really helped but i still wear pull up pads as i still occasionally get caught short (usually when somone who is not disabled has taken their hoard of kids into the disabled access toilets in malls etc so that you have to wait until the entire clan has finished their business- that really annoys me as the very same malls provode parenting rooms for just that purpose, it just means a short extra walk for them)