Doctors can not decide whats going on!

Question

My name is Kimberly and my daughters name is Lauren. Back in April Lauren started having some weird symtoms. It started out with about a quarter size place on her right hand that she couldn't stand to touch. Over a period of two weeks it spread, till on May 2nd. she couldn't stand to touch anywhere on her body, except for her left leg and she couldn't empty her blatter. Plus she couldn't stand for anything hot or cold to touch her. I took her to the nearest hospital where they did a mri and then took her by ambulance to Parkland. Parkland found a cyria (SP) malformation of the brain and a syrix in her spine and sent us home to come back in a week for brain surgery. Once the pain meds they had given her wore off we were on our way back to the hospital but this time we took her to Baylor. They too found the malformation and the syrix but said there was no way that was what was causing the systems she was showing at the time. They said Parkland got tunnel vision when they saw that stuff. Anyway she was admitted to Baylor for pain mangement and test. For a week they ran every test known to man. While she was in there she got worse. Her face started to drop on the right side and she had double vision. The pain of being touched was so bad that they had to take her blood presure on her left leg only. She also had weakness in both arms but worse on the right side. And her voice was affected. While in the hospital she had many MRIs plus a spinal tap. The spinal tap was neg. and the MRIs showed lesions on the brain and upper spine. Plus her upper spine was very swollen. After they ruled out no infection of any kind they started her on a high dose of steroids. After 7 days in there we went home. About 3 weeks ago it looked like things were starting back again so they gave her a steroid pack. It seemed to calm down. Then on Saturday of this past week it started up again. She had a MRI Wednesday and there are now lesions on her lower spine also. She is seeing a MS specialist but she says the lesions Lauren has are not typical for people with MS and that she does not feel like she can say forsure yet if it is. She says people with MS have lesions in the cortex of the brain. Laurens are in the center of her brain. right above the brain stem. And she says she lesion on her lower spine at spoty. like many one ones and in mS people that are attached. She is starting her on the high dose steroids again and said she may have to do chemo. She is sending her either to UT Southwestern or to the Mayo Clinic, whoever can get her in the fastest. Does anyone have any ideas what we could be dealing with and what we need to be doing? I am at a loss as to why they can not seem to come up with what is wrong. In the hospital she had 4 doctors and now this one. Any advice is welcomed.

Quixotic1 · Answer

Ooops, I went automatically into pediatrician mode.  I should have asked her age.

I would go to the Utah Center if they have an MS Clinic.  It sounds like they are right on the ball.

We have had several dissatisfied people with the Mayo Clinc and some that were happy.  There can be a lot of arrogance at a big name place like the Mayo and excellent care is not guaranteed.

Quix

kimberlyrcrow · Answer

Shelly, its real hard to say if she is afraid or not. She is a very strong person to begin with. She really hasn't said a whole lot. I know in the hospital she had a really bad day one day cause she said they couldn't seem to find out what was wrong with her. Other then that like her Daddy said, it would be harder on us then it is if she wasn't handling it the way she is. And yes, her doctor is the one who sent all the info to UT Southwestern and they called today and asked Lauren to feel out a form that they emailed her and to send them her last MRI CD. As far as The Mayo Clinic, I called them and they wanted a diagnoses, cause they said they do not have a General Neroigist. And I told them well thats why her doctor wants her to come there. I have a call into her doctor to see what she can do.

sllowe · Answer

How are her spirits? Is she afraid?  Are the Drs working to get her into one of these 2 places on her behalf?  I'll pray for speed here....

-Shelly

kimberlyrcrow · Answer

Shelly, Laurens Malformation is a type 1 to 2. It is not putting any presurre on her spine. It was checked again on June 30th and will be checked every 6 months. He said there was no way it was causing the syrix. And no way the syrix was causing the swelling in the spine, cause the syrix was to small for the amount of swelling that she had.  When we went back to him which was on June 30th she had a MRI that morning and the syrix was almost all gone. I have asked the Nero Surgen and both her neroigist (SP) and they all say there is no way this is all related......GGRRRR I have a call into her doctor right now to ask about this being a rare form of MS. Which I am sure she has thought about. As I said we are trying to get her into the Mayo Clinic or UT Southwestern. Funny to me, MS is her doctors specialty and she is so stumped she is the one who said we needed to go to one of these places. I am so worried because of the agressiveness of it that the longer it takes to get in somewhere so much damage is being done.

sllowe · Answer

Hi there!

Welcome and thanks for coming our way!

I'm so sorry your daughter has to endure this.  Did the Drs explain the syrinx was caused by the malformation? I'm limited in my understanding of all of it, but thought that is why the syrinx forms.  From blockage somewhere, as hers was identified as the malformation.

Did the Drs decide not to operate on the malformation for any particular reason?  I'm sorry for all the questioning, but it will help us to understand.  Also, I'd be curious to know if the malformation and the subsequent syrinx and the disruption of it all can cause lesions.  It's a long shot, but I was unable to find this in my research.  I researched the causes and problems associated w/syrinx, when it was thought I had 2 that elongated through my entire c-and t-spine.

Keep us posted, sounds to me that you really need an expert center as Quix suggests. If you'd like more than what is listed, please let us know.

ttys,
Shelly

kimberlyrcrow · Answer

Sorry I didn't say how old my daughter. She is 21.

Quixotic1 · Answer

I am so sorry for what you and your daughter are going through.  It must be frightening for you both.  I can't say whether your neurologist is correct or not.  Something I have learned about MS is that no one can say that MS always does just this or that.  If I had a child with even possible MS I would want them seen at one of the national Pediatric MS centers of Excellence.

My spinal lesions are all spotty.  They tend to coalesce or merge together later in the disease.

Here is the contact information for those centers.  The first two to be named are the ones at SUNY and at San Francisco.  The others are more recent.  Perhaps your doctors could get a consult from one of them before you travel.  Dr. Lauren Krupp is known internationally.

http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx

The nearest one to you in Texas is probably the one in Birmingham.  I would try to get a conference going between her doctors there and one of these centers.

That is my main concern.  These are places where the experts in pediatric MS have gathered to pool their information.  Pediatric MS is so unusual that I would want specialists in that area.  I hope this helps.

Quix