Anal Sphincter Muscle & MS

[yorkieville]

Hi, Everyone.

   I am undergoing evaluation for MS. One problem I have is loss of bowel function. A proctography revealed I have no function, at all. My GI doc says I have a tight anal sphincter muscle and feels it is nerve related, and to finish my evaluation.
  Does anyone know how MS affects the anal sphincter muscle?
  I attempted to do some rectal kegel exercises, but they only make the nerves in my spine sting more.
  Thanks in advance.

[Momzilla]

Hi, yorkie!

Are you new here?  I go to bed pretty early lately, and don't recognize your name.  I want to give you a warm welcome if you are.  Warm welcome!  If you've been floating around, and I just haven't seen you, I'm sorry!

I'm sorry you've gotten to the point of MS evaluation.  No bowel function at?  What an awful, awful thing.  I'm so sorry.  That must be just miserable!  I know for certain that bowel dysfunction is one of the possible symptoms of MS.  I just don't know how that dysfunction manifests itself.  I'm sorry.  I wish I could help.  

I do know that with MS the messages can get mixed up, that nerves can mix signals, muscles can atrophy, suffer spasticity...so many fun options!

I wish I could help you more with the answer you're looking for.  It sounds like the GI doc is looking out for you, at least.  Great!  Who is doing your MS evaluation?  What kinds of testing has she/he ordered?  

I know someone will be along that will be able to help you more than I.  In the meantime, pull up a comfy chair, sit back, relax, and let us do what we do best -- try to be a good support system while you're waiting for answers.  

Feel well,

'Zilla*

[yorkieville]

Hi, Zilla.

   Yes, I am new here. Thank you so much for the warm welcome. I have posted in Medhelp, in other forums, but this is my first time here.

    No, no bowel function, at all. It is very miserable. Lots of pressure. I have to use vitamins & minerals to the point of "forcing" things, and even then, I don't empty.

    My Neuro is Dr. DiBiase in Valparaiso, IN. So far, I have had a Brain MRI, with & without contrast-only one white matter lesion. A lot of labs for things like; Diabetes, Lupus, Lyme disease, etc. I had a spinal tap, (then a blood patch because the fluid would not stop leaking. Believe me, there is nothing like the spinal tap headache.) And Evoked Potentials.

   On Tuesday, I have an appt. with the Neuro to hear the results, and hopefully have a diagnosis, or hear what other direction he wants to take.

    Your words of support are very comforting. I've been trying to read a lot of the posts, and it makes me sad to read how many people have suffered so long, without a diagnosis. I know what that feels like. Sometimes, it feels so frustrating and hopeless, like life has gone on, without us.

    Again, thanks for the welcome.

    Best,
           Yorkie

    

[crystaly]

Hi thought I 'd mention Ive got similar sort of problem but not as bad as you thank god!  I have to squeeze the muscle to go if at all ! Soz for the graphic details > I literally dont go for wek and half end up taking senna max strenth which cripples me for days till I di go Usually 4 days of senna works till the next time !1 Got every sympathy with you it must be awful ! Momzilla didnt even know this was a symptom of ms ! crystaly

[yorkieville]

Hi, crystaly.

    I'm so sorry you have a similar problem. I'm glad it's not as bad as mine. The thing that has made it more uncomfortable is that I had a hysterectomy in 6/06 and the need to use the vitamins and minerals to "force" things puts too much pressure on my pelvic floor, and it causes the muscles or nerves in my inner things to "pull". Have you been diagnosed with MS, or are you still going through the evaluation?

    yorkie

[Momzilla]

Hi, Crystal~

I just looked around a little.  It's estimated that 70% of MS patients have some type of bowel dysfunction.  Most don't report it to their doctors because it is can be difficult to talk about.  It looks like constipation is the most common problem.  I hear that.  Although I am not diagnosed with anything at this point.  Tragically!

Take care, Crystal, and Yorkie!  Quix should be around to make some more sense of things!

Zilla*

[yorkieville]

Hi, Zilla.

   Yes, I agree, constipation is difficult to talk about with the doctor, and for the longest time, my doctors kept telling me to take a laxative, eat more fiber. Finally, in June my Gyne became concerned and ordered a CT that showed my bowel was not emptying, Then, I had a proctography.
   I realized I had to talk about it with my Neuro. Now, I have to discuss it even further on Tuesday, so that he can determine if it is nerve related.
   Maybe mentioning it here, will encourage more people with the problem to regard it as a possible MS symptom and it will aid in their dx.
  I'm so sorry that you do not have a dx yet either. Honestly, I believe 'not knowing' is worse than 'knowing'. I feel if I know what is wrong, I can at least, begin to deal with it.

  Best,
        Yorkie

[crystaly]

Yep your right there not n easy thing to tlk about at all ! Ive nodx ohter than neurological dx unknown eitological cause of symptoms momzilla so not on my own I know from reading posts on here. Great sense of humour youve all got anyway Bit that way myself good coping mechaism sometimes ! Yorkie Ive never mentioned mine to the neurologist either ! Ive been taking fibregel 2 a day for last two yrs but stll have problems .  Sooooo frustrating now knowing rather know what i,m dealing with !1!!!! xxx crystaly

[yorkieville]

crystaly,

   Mention it to your Neuro, maybe it will aid in a dx. Seems like, the more symptoms we can give them, it points them in the direction. I had never thought too much about symptoms that have come and gone, now realize they may be part of the big picture. I had never considered MS, until the Neuro brought it up at my 2nd appt. in August.  He felt that with the white matter lesion, MS in my family, and my symptoms, it warranted evaluation.
  It seemed like I went from being healthy and active, to nearly invalid status in a frighteningly short amount of time.
  With a dx of "unknown etiological cause of symptoms", how does your Neuro treat your symptoms?

[crystaly]

Sorry took me a while to get back to you Had the grandkids down LOL I don't see my neuro for 6 months now but will mention it when I go back just been abit embarrassed to be honest. That is unless they stop altogether that is then I will see my gp . I have been on clonazepam and amntriptaline since I had my first episode. The clonazepam was to stop action myoclonus which is horrible !! No other word for it !  I was the same as you up until 3 + yrs ago always on the go as my hubby has complex variety of health problems and I used to work

[yorkieville]

No problem. Lucky you spending time with your grandkids. How old are they? I haven't seen my twin grandsons since they were born, in Feb. Son lives 7 hours away. I know how you feel, it was embarrassing mentioning the constipation to my Neuro the 1st time. I dread discussing it further on Tuesday. Can't imagine how he will determine if it is nerve related. Can I ask what your 1st episode was like? It's awful to be this way. My hubby is retired, and we used to have so much fun. Now, he cleans house, does the laundry, even dries my Yorkies after I bathe them each week, and believe me, that's a job, because they have floor length hair. Sorry your hubby has health problems, as well.

[crystaly]

Hi sherry their 8 little girl leigh, 5 yrs elliss and 3 1/2 jack . We usually have them on a saturday all together lol glad when theyve gone home but love them to pieces . Quite funny the 5 yr old said he was gettin me power rangers rocket boots lol so I could walk ! were lucky in the uk its nothing like the travelling time you have in the states shame !!! double trouble your sons got there. Does he come over to you ? Ist episode 3 yrs ago started with really bad burning ,stinging pains in legs , then all over the show , walking problems stiffness in legs , spasms in feet balance problems , blury vision , myoclonic jerks when I stood up or tried to walk and other stuff can't remember all  Spent 3 weeks as an in patient local hospital no tests apart from blood test. They repeatedly asked me whether i had mental health problems to which I replied well I didnt have when I got up the morning all this started. Include din that is have you had any recent traumas NO! I said They then decided to get a neuro from another hospital and thats who I still see now ! Crazy isnt it! What about you did yours come on sudden or gradual chris

[yorkieville]

Oh, what wonderful ages! You are so lucky to see them every Saturday. My hubby & I were planning to move down by our son this past spring & help with the babies, but knew I needed to get dx'd first. No, son & daughter-in-law have not made a trip up since the boys were born. Guess they've got their hands full. They both work, full-time, as well. Wow. My 1st episode started 3 & 1/2 years ago, just like yours, with burning, stinging legs. Then, about 6 months after my legs began burning, I developed a low back ache that progressively worsened to the point I couldn't sit up for very long, barely could stand for very long, let alone walk. D.O. misdiagnosed me with ankylosing spondylitis. None of the meds helped. PT didn't help. Nerve blocks didn't help. Finally went to a Neuro this past August, and here I am. It really IS crazy. Never saw it coming.

[crystaly]

Arrhhg thats areal shame you live so far away from them . I can really understand why you wanted to move nearer > I was lucky I was at my eldest grandsons birth so held hime when he was afew minutes old and when my daughter had her little boy jack . Makes me smile thinking about it !!  Its hard if they both work though to get over especially with twins thats a full time job in itself .
I agree you do need to get a dx though especially if your seeing a neuro for the first time . Its too much of a coincidence though that so many people on this forum have similar symptoms dont you think or are some of these neurologists suggesting weve got mass mental health problems? The clonazepam has helped me with nerve pain and amnitryptaline ! The clonazepam works as far as I know on the cns and slows the signals down from the brain to the spinal cord or something like that ! Only problem is its highly addictive and withdrawel is awful cos i tried to see what happened ? Does your medical insurance cover your costs ? Is their a limit to who you can see in terms of specialists ?

[yorkieville]

You were truly very lucky to hold your grandsons at birth! I did not get to hold my grandsons until they were 10 days old. But, I made up for lost time by not putting them down for very long for 3 days! :) I cried the whole trip home when we left. Yes, we felt I needed to get a correct dx 1st, esp. because my son & daughter-in-law live in a small town, pretty far from specialists. Oh, I agree, I do think it's too much of a coincidence that so many people in the forum have so many similar symptoms. There's no way we are all mental! I think that's a label the docs give when they don't know the answer. I'm glad the clonazepam has helped you with nerve pain. That's one of the meds the doc has to "wean" you off or you're right, the withdrawal is awful.  So far, my insurance has covered all my testing. They don't pay office calls, but if I see a doc in my PPO, I get a reduced fee. So, I make sure a doc is in my PPO. Ran into a problem here recently; saw a Gyne in the PPO but she didn't submit the claim as an office call, charged me  $719.00 for 30 minutes. Not sure why she can get away with submitting it that way. Does your medical insurance cover your costs? I guess, once I am dx'd I'll find out what meds they cover.

[crystaly]

I,m sure you will make up for it so don't worry to much !! Glad you got to spend time with them all its areally memorable thing . Nothing like having your own kids !! Totally different expereince . I agre thats what drs do when they don't know answers shame they arnt big enough to say we dont know rather than blame the patient in some way !! OMG to the $719 dollers hope you manage to get that back ! I havent got medical insurance at all Worked in alow pai job when kids were younger and my hubbys wage wasnt alot either. We have anational health service over here bit like medicaid I think its called over in the us. We dont have as many restrictions as you though. Our main problems are waiting times and the choice of who you get to see > Basically your dr gp refers you to a neuro or other specialist and then your sort of stuck with that one Tests are hard to get unless youve money to pay for them which is basically why Ive had none since the intial ones . I could go private but for the cost and get seen tomorrow. Problem being no money to do so ! Same for alot of people in the states though isnt it ?

[yorkieville]

It was really important to my hubby & I, to make the trip to see the babies as soon as we could when they were born, because we wanted to have that memory. It was wonderful! Yes, it is a shame that docs ego's get in the way. I have had docs admit they don't know, and I have the utmost respect for them. Well, I haven't paid the entire $719.00 yet. I've contacted my insurance company and asked how this Gyne can charge me this amount, when she is in my PPO. The tech that did my evoked potentials explained to me that the Gyne has an agreement with my insurance company about what she can charge, so she said to contact my insurance company. She told me to let the bill go to collections and they will investigate the claim if I tell them why I haven't paid it. Kind of scared to do that though. What's worse is I had to cancel my follow-up appt. because I didn't want another charge like that one. Would you believe, all she did was a pelvic/rectal exam and order the proctography? Oh, boy, I am so sorry you don't have medical insurance. It's bad enough being sick, but then to have the added stress of not having the tests done that you need, makes it even worse. Yes, it is the same for many people in the States.

[crystaly]

Yes totally agree inflated egos don't help people and often its quite intimidating when you face a professional consultant . Many just dismiss people which is horrible. You do end up thinking is it me !!! am I nuts !!! or I have anyway don't know about anyone else! Strange how your gyne arranged for test ours over here wouldn't eg if you go to your neuro with reflux problems they wouldnt refer you well mine didnt to see someone else! Maybe her secretary or the financial dept have messed up ther its certainly sounds as though they have ! Not surprised you haven't paid it all what a cheek! Don't know how they can justify it > Although if you want to see a private consultant over here its £350 to see one . I think you do actually get worn down emotionally by it all well in my case I used to be really assertive and its gone out the window a bit of late > I know thats a bit defeatest but you get a bit fed up at times ! Bit tired now so catch you tomorrow if your on the forum all thebest and take care xx chris

[yorkieville]

I used to allow the doctors to make me think it is all in my head. But, as I have gotten older, I have come to realize, I know my body, I know when something is wrong. Yes, I told the Gyne I'd had constipation problems ever since my A & P repair. She examined me, said everything seemed fine, but tests might show otherwise, and ordered the test. I had constipation problems before the hysterectomy, things seemed better for a bit...then I needed the A & P repair. Now it appears its a nerve problem, maybe an MS symptom. So, then do you have to go back to your GP when you need a referral? Yes, I think somebody messed up. Our Insurance Benefits Rep says the doctor is responsible for the codes. My hubby has left messages for her finance person but she has not returned his calls. Maybe if I don't make any more payments on the bill, she will call. I understand how you feel, I am feeling a bit worn down at the moment. Tired myself, I will check back tomorrow.
Thanks so much for posting to me. It helps to talk with someone else going through the same thing.
XXX yorkie

[Momzilla]

Hey, Girls!  Sorry, I was gone for the afternoon.  We had an Okterberfest at our church in Michigan and my two youngest boys, ages 11 and 7 were in the talent show.  

I see you've been chatting.  How nice!  I love this forum!  I really do!  

I hope you both don't mind me interrupting here.  Yorkie -- I took a medical billing course, and I really don't think you should let any more time pass before you get to the bottom of your billing problem.  They have time limits on those things, depending on what type of insurance you have.  Letting it 'go to collections' might just be within your doctor's office.  It may not actually be a collection agency they report to.  But check that, know what I mean?  If it's going on a year since your test, get moving on the appeal.  Your time limit may be running out.  Just a friendly word of advice from your friendly neighborhood medical biller*  ; )

Also, I hope they get some answers for you soon.  Gosh, how miserable you must be.  But it sounds like you've got a great family!  Isn't that the best?  

And Chris -- I was talking to you on the other thread, too--I didn't realize you were across the Pond!  Grandchildren!  We've got five boys, the oldest is in his first year in college, the youngest is 7.  We joke that we can't wait for grandchildren.  But, of course, we can!  And it better be a ways off!  Grandchildren, how lovely!  It was so sweet reading the exchange between the two of you...

I hope the two of you can find answers soon, as we all struggle along together.  Thanks again for sharing!

Chris*

[grannyhotwheels]

Hi and welcome.  I'm so sorry that this has happened to you.  I have problems with my bowels also.  I may go 2 to sometimes 3 weeks in between movements, and then that's usually with an enema.  I have no feeling and I just don't know if I need to go or not.  Also, I have problems with my kidneys.  Same thing no feeling and I don't know when I gotta go.  I just recently started wearing a foley when I go somewhere because the depends don't always protect me enough.

What really sucks is I change my grandbaby's diaper and then my own. lol  How funny is that?

Anyway you are not alone.  I know it's a horrible thing for all of us.  I'm only 42, I should'nt be wearing diapers.  You know what I mean?

I wish the best for you and God Bless You,

I'll be praying,
Carol
'
  

[Momzilla]

Oh, Carol,

Does it ever stop with you?  I just want to reach through the computer and hug you!  You have been through SO much, and you have the absolute BEST attitude.  It' is just such a dagnab good thing you have such HOT legs, or I don't know where you'd be, Girlfriend, really and truthfully.

'Zilla Twinkle Toes*

[yorkieville]

Hi, Zilla.

    Oktoberfest, what fun! My goodness, we don't live that far away from each other...I'm in NW IN.

    I agree, this forum is wonderful To find people that actually understand.

    Interrupting? My goodness, you are not interrupting! I believe it's called 'chatting' :) I appreciate the advice about the bill. Would it be an imposition to ask you how I can get the doctor to submit the bill with the code the insurance company requires? The office call with the Gyne was at University of Chicago Hospital, Center for Advanced Medicine, this past July 18th. When we received the Explanation of Benefits from our insurance company, Blue Cross Blue Shield of Michigan, the claim was submitted as two things; $210.00 for hospital services and $509.00 for Medical Care. My DH went round and round with phone calls to BCBS who kept insisting the claim was denied because of the way it was submitted, and the billing dept. at U of C kept insisting they couldn't submit it any other way.  We've since found out that $210.00 was a charge for "use of the office" and the $509.00 was the doctors fee. (the actual bill we received says GYNU-EVALUATION & Management 124 99214 719.00) We've never heard of a charge for use of the office, and apparently it's not a covered benefit. Our plan does not pay office calls, but if we use a doctor in our PPO, they have an "amount allowed' so we pay a reduced amount. This Gyne is in our PPO. We are not sure how she is allowed to get around that fact. Last week, I told my GI doc about the bill and he said it was ridiculous and said DH should go see the Benefits Rep at the plant. Well, the Rep agreed, called the BCBS hotline number and they wouldn't even discuss it with him. The Rep said the doctor is responsible for the codes and suggested DH call the doctors head nurse and ask her to discuss it with the doctor. DH called and left a message on the voice-mail. He also called the Gynes finance person when we first got the bill and left a voice-mail but she didn't return his call either. We wrote to the Physicians Board, no response. We sent a written letter to BCBS last week. DH spoke to billing when we got the bill and said he would pay what he could on it each month, and explained that he is retired and we live on a fixed income. (we made a payment when the 1st statement arrived, and on the 2nd statement, they said the bill is over-due.)

    I apologize this is so long. It may end up we have to bite the bullet and pay the bill, but the thing that really worries me, is, if this Gyne can avoid submitting the bill in a manner that we get the "amount allowed", how do I know what doctor in my PPO is safe to go to? I have not run into this problem before.

    Back on track, yes, my DH is great, and I don't know how I would manage being sick without him. When I give in to tears of frustration and hopelessness, and I admit that I do, (today was a teary day) he reassures me that I will be diagnosed and back on my feet.

   You are so blessed to have 5 boys! Just imagine how many grandchildren they will give you someday......:)

    I pray we all find some answers oon....

    XXX
    Sheila

[yorkieville]

Hi, Carol.

    Thank you for the welcome. This is a very nice place. Such kind, caring people here. I don't feel so alone anymore. But I am sorry so many others are going through it.

    Carol, I have no feeling either. I feel the pressure of stool. I do not feel it when I pass stool. If I don't use vitamins and minerals to go, then, nothing happens. No urge.

    Have you tried the Poise Ultimate Coverage Protection Supreme pads? I bought some for after my proctography, was afraid I might have problems after, on the long drive home from Chicago, IL to NW IN  Joke was on me, nothing came out. Not even during the test when it was supposed to.

   I'm sorry this is happening to you, too. Yes, you are much too young to have this problem.

    Carol, God Bless you, too. I'll keep you in my prayers, as well.

    Chris is right, you do have a wonderful attitude.

    (((BIG gentle HUG)))

    Sheila

[Momzilla]

Hi, Sheila~  Oktoberfest was great fun!  I'm funned out, tho!  My boys were so cute, if I do say so myself...

Where did the services take place?  At the hospital or doc's office?  This is so confusing.  But for me confusing happens all the time.  It's true, the doctor is ultimately responsible for coding.  He/she has a biller who should know exactly what to bill for.  Blue Cross is NOT going to tell you what it will pay for.  Ever.  "Use of office" sounds hokey.   It sounds like "double dipping," almost.  That's not allowed.  I work for a surgeon, and we use a different section of the coding book, but I don't think there's anything comparable to that.  Coding always surprises me, though!

If something's not a covered benefit, and the doc is in your PPO, they shouldn't charge it.  They know not to bill your company for it.  They should have gotten pre-approval before doing the procedure.  "Use of office?"  What does that mean?  It sounds fraudulent, kind of.  That's why it's not a covered benefit.  DO NOT pay it yet until they explain what it is.  

Get back to me about where the procedure was done, OK?  What exactly was done?  What did they do and what ALL did they bill for on that date?  Interesting as the plot thickens.....

Later, Sheila,

Zilla*