MS-No Visible Lesions

[yorkieville]

Hi, Everyone. Sorry I haven't been on. I'm in HELL. Seriously, the pain is now, unbearable. I can no longer eat, anything, but very bland food, because I can't digest anything. However, my appt, with my new MS Specialist went very well in September. She ordered new MRI's of my brain & spine, examined me thoroughly, and said she saw problems with my brain. She ordered a ton of blood-work, as well.
This is where I am hopeful. She said, if she sees nothing else wrong with my brain, she will begin me on medications for MS. she said I may fall into the small percentage of people that have MS without visible lesions.

So, my question is;what medications do they typically start you on, when you have MS without visible lesions?

Sheila

[yorkieville]

Just wanted to state that my home care nurse taught me my bowel program, at home.

And I have been able to manage it, in spite of the loss of nerve sensation.

If I were not able to manage it on my own, I would want to be in a medical facility, as you said, with trained personnel.

And I agree, there are some things, I will not discuss in an open forum. So, I appreciated your private message.

I don't mind making references to certain things, but I am not going to go into some details.

Sheila

I'm just hoping there is a program that will help restore some nerve function.

[Sumanadevii]

The goal of my program was not to establish a time to eliminate at the same time every day.  The goal is to be sure a bowel movement happens at least every other day.  If not there are medications available to be sure you do.

The neuro in charge of me during this time is a very bright man.  There was more than one reason to have it done in a hospital setting.  It is not just cleaning up a few messes by a kind family member.  It requires much more than a willing untrained person.  It requires medical personnel that have an understanding of the program, a physician that knows how to tweak the medications and a staff that has been trained in the program.  These staff members will know what to look for and the ability to be reassuring to the patient that what is happening is "normal" when it seems anything but.....They will also be able to report back to the physician as to what "stage" you are in the program.  I personally thought by day five I had it beat and was done.  lol....was I wrong.  I was just at the beginning.

It is not an unwillingness to share on the open board.  I do know we talk about many things that are embarrassing.  This goes a bit beyond that and I personally do not feel comfortable doing so.  I also do not think it is breakfast or early morning talk that all would enjoy reading.  Thus my offer to take it to private message.

[yorkieville]

Hi, Mary.
Thank you for the link.

Ad thank you so much for the good news. And explaining the way the bowel program works.

My new MS Specialist is aware of my bowel program, and I will discuss it further with her next week. I appreciate your telling me what type of doctor I should request to be referred to, if she can't help me with the bowel program. At my 1st appt. with her, she told me to take Metamucil for the diarrhea, but it doesn't help move the stool past the internal anal sphincter muscle, completely. And it is extremely painful when I do have a bowel movement. My back and rectum hurt for hours.

In all honesty, I would prefer to be admitted to an acute rehab facility for the training program, because it is just my  husband & myself, and I would truly be uncomfortable with him helping me.

Thank you for the link for the basic info about the bowel training program.

Fortunately, I haven't had any accidents.....yet, but I feel, if something isn't done to help me, that will come next.

I will be happy to share what I learn, experience in the open forum. I've been a member for a very long time, just not active in awhile. Fatigue and pain has had me so very run down.

I don't really look back at what might have been, however, I have advised people that talk with me, about possible MS to avoid my former Neuro. We're fairly new to this area, and after living here, almost 7 years, I've heard from different people, that he is the worst.

I feel more positive about my future since being referred to my MS Specialist.

Sheila

[twopack]

MS damage to the spinal cord is certainly considered a spinal cord injury or disorder - it just doesn't come from trauma.  United Spinal Association is a good place for lots of information about both spinal cord issues and/or multiple sclerosis.  Membership in either is free.  Here's a good place to start for lots of information.  http://www.spinalcordcentral.org/

Here's some good news Yorkie.  You are exactly the type of person bowel training programs are designed for.  A bowel routine becomes part of daily (or near daily) routine for people who are paralyzed and therefore have no feeling and no ability to push at will.  

The purpose of the routine is to attempt to train the bowel to empty completely at the same time every day.  At first this usually requires the use of laxatives or softeners taken by mouth.  The goal is to eliminate most (if not all) of those over time and stimulate the bowel to empty from local rectal stimulation only.

Any physicain familiar with treating spinal cord injured people should know how to establish a bowel routine but docs can't know we need help unless we tell them.  If your neuro can't help you, please ask to be referred to a specialist called a physiatrist (physical medicine specialist).  

It is possible to be admitted to an acute rehab facility (that is NOT a nursing home) so you can be taught how to better care for yourself (as independently as possible) when you return home.  It is also quite possible to establish a bowel routine while at home.  It may require the assistance of a willing family member you can become comfortable with helping you.  People who want you to feel well and function better are often willing to learn to help.  Yes, it can be embarrassing at first but everyone soon learns to handle medical care with a medical mindset.

You can find out the basics involved in a bowel routine in this brief description:
http://sci.washington.edu/info/pamphlets/bowels_1.asp

Please try and ask any questions out here on the open forum where everyone can benefit.  You are far from the only member who would benefit and we always try to talk openly and frankly about ALL the aspects of living with the difficulties our disease presents.

Many people seem to look for a simple or intermittent solution to constipation.  Establishing a routine does take some time and work but can pay off big in normal elimination with few accidents to worry about and feeling much better in general.

I'm so glad you are finally getting the type of help you might have benefitted from years ago.  Try not to look back at what might have been.  There are still good places to get to from where you are today.

Mary

[yorkieville]

Hi, Sumana.

I agree with Quix, because I have always felt she was our Expert here in our MS Family.

I am so very sorry that you, too, have suffered spine pain, You have described exactly what I live with every day of my life, since the fall of 2005.

Yes, I would be most grateful if you sent me a private message regarding the bowel retraining program. Do you think though, since it has been established that I no longer have any nerve sensation in the internal anal sphincter muscle, that it would work for me?

I can understand being embarrassed about posting it on the forum. It is a very embarrassing issue.

Thank you so much. You have offered me some hope. I feel, if the bowel issue could be corrected, my spine pain would not be so severe.

I'm not usually up so late, but it is one of those nights.

Sheila

[Sumanadevii]

I, of course agree with Quix 100%.  You are so fortunate to have found a neuro that thinks outside the box.

When I read about your "spine" pain my heart went out to you.  Spinal pain was my biggest complaint...the other stuff was small potatoes but that spine pain...like a raw open nerve has never left.  Then I read a bit of your older posts.  I read about your journey with bowel problems.....

Just want to share what one of the top neuro's in the country told me on my last visit (30 days) to the hospital.  He said that my MS is acting more like someone with a spine injury (I am guessing it is due to the lesions on my spine that by the way were totally missed on a 1.5tMRI  years ago).  At any rate, I have suffered the bowel problem too.  His first priority after getting enough steroids in me and I was able to sit) was to begin a "bowel" retraining program.
I had thought not moving my bowels but every two weeks or more was normal for MS.   He said yes but it had to be treated.

He did say it was best to get it done in the hospital rather than at home...Trust me he was right.  It is nothing that could possibility be handled at home.  If you want more information, I will be glad to send you a private message on how it was done and what continues to be done as follow up.  It is not pleasant enough for the board..besides, I would be too embarrassed to explain most of it.  I will tell you it worked and I am so much better off in that area.

So I do believe the bowel problems are coming from spinal lesions...even if they are not showing on your MRI.

Hope this offers some hope to you.

Sumana

[yorkieville]

Quix,

I forgot to tell you, it is so wonderful to see you again!

I rarely get on-line-my eyes are so blurry and my hands don't want to move where I want-and even when I run spell check-I don't always recognize the word is spelled wrong.

I have never forgotten my MS family here-I have kept each and every one of you in my prayers.

My Baby Bear-Moki stays in touch with me via e-mail.  It is a little bit easier, because I can write, save, and go back to it.

Sheila

[yorkieville]

Hi, Quix.
She was Heaven sent! Actually, my spine pain became so unbearable again this Spring and Summer that the DH wanted me to see a Top Spine Specialist, so, after he examined me, and talked with me, he told me I needed an MS Specialist, and he called her, personally and talked to her, arranged an appt.
Quix, I finally see light at the end of the tunnel-and it's not a train!
She was very displeased that no one had taken my weight of 74#s seriously, and said I was severely malnutritioned. My constant constipation turned to diarrhea in June, and I caanot eat anything other than oatmeal & banana's made with water, applesauce, rice, toast, and I still get diarrhea. But due to the lack of nerve sensation in the internal anal sphincter muscle, it will not pass, so I am always in pain.
Yes, I remember T-Lynn. It breaks my heart that they waited until they saw brain atrophy before they diagnosed her.
Rich and I have both seen a lot of problems with me-related to my brain, I don't recognise them, at the time, but he does.
I never thought I would find a doctor that could help me. And each day, I feel as though I am dying. I see myself deteriorating, and I haven't been able to do anything.

Sheila

[Quixotic1]

I cannot begin to tell you how good it is to see you again.

Where in the world did you find such a forward thinking neurologist.  I couldn't be more pleased.

There is no guideline for which med would be chosen for a person with no visible lesions.  Remember they are treating YOU not the MRI.  You have pretty severe disease, so I would think it would be the neuro's favorite drug for people with severe disease.

Remember T-Lynn (AKA Youngatheart)?  She was really going downhill with no visible lesions until they saw frank brain atrophy.  Clearly there had been a ton of too-tiny-to-see lesions that eventuallly destroyed a whole lot of brain matter to show up as obvious atrophy in a woman in her 40's.  Only later did the lesions and black holes become visible.

I think she was place on Rebif, but it really is "Neurologist's Choice."

Quix