Life with MS & EDS

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

February 10, 2010

Press Release from Buffalo re CCSVI Study

Filed under: Uncategorized — by mseds @ 1:43 pm
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The University of Buffalo issued a press release regarding the results of their first CCSVI study.  The Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study included 280 MS patients (mostly with RRMS) and 161 healthy controls.  The results indicate that more than 55 percent of the MS patients had blockages in their extracranial veins, disrupting the normal flow of blood from the brain.  Interestingly, 22.4 percent of the healthy controls also demonstrated blockages.

“When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.”

Robert Zivadinov, MD, PhD, University of Buffalo associate professor of neurology and principal investigator on the study stated, “The data encourage us to continue on the same course.  They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available.”

Complete data will be reported in April at the American Academy of Neurology.

February 4, 2010

Exciting News on CCSVI from BNAC

Filed under: Uncategorized — by mseds @ 10:35 pm
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The BNAC released a newsletter with updates on their research.  They are moving forward on the second diagnostic study and have added a third study that is actually focused on treatment.  This is extremely exciting and promising news.  Although they have not yet released the results of their first study, the fact that they are starting a treatment study makes me think they definitely found proof of CCSVI in MS patients.

While I’m on the list for the second study, so are 13,000+ other people!  So, I decided to sign up for their Diagnostic Testing.  For approximately $4,500, I can go up to Buffalo and get the tests I’ve been asking for.  For approximately $6,000, they’ll throw in some extra tests, a hotel, and limo service!!  I decided to sign up for the basic package and Posey and I can do a road trip instead of me flying there and having limo service.

I cannot believe that I just signed up for a $4,500 medical test!  I am just that curious and need to know.  There’s a small chance medical insurance will pay for it, but it’s not likely.  We’ll just have to find a way to pay for it.

Oh, the kindergarten transition meeting went well.  They are setting up tons of evaluations and observations and we likely won’t get to meet with them regarding the IEP until May!  I’m less stressed now that things have started, but now stress has shifted to nervousness.  At least the CCSVI news has me distracted!

February 3, 2010

Kindergarten Transition Meeting

Tomorrow is Little Sister’s kindergarten transition meeting, so in typical Ivy fashion, I started stressing about it a week ago and am now extremely stressed.  I spent most of my spare time gathering papers, writing notes and documenting her progress and lack of progress in key areas — cognitive, gross motor, fine motor, sensory, etc.  I have a one pager now with things I think they should know.  I even ran it by my mom-in-law who is a kindergarten teacher.  She gave me good questions to ask them, such as what will they do if she refuses to go to an assembly or gets upset during one, will they let her use a slant board or sit on a pillow, etc.

I find the whole evaluation process depressing.  It forces you to focus almost exclusively on your child’s negatives and lack of progress.  I want to acknowledge fantastic progress she has made in some areas, but that could threaten her access to services.  Therefore I’m forced to emphasize all of her problems and that has me in the dumps.

When I don’t have to compare her to other 5 year-olds, I think she’s doing pretty well, but throw her in with her peers and reality hits.  She’s still at least a year behind in most motor areas and her sensory issues keep intensifying (not that schools seem to care much about that, but it makes home life rough.)

Right now I need to focus on getting her services and an IEP.  Based on Section 602 of the Individuals with Disabilities Education Act (IDEA) (P.L. 108-446), there are 13 areas of disability that qualify a child for services and an Individual Education Plan (IEP):

  1. autism
  2. deaf/blind
  3. deafness
  4. hearing impaired
  5. mental retardation
  6. multiple disabilities
  7. orthopedic impairment
  8. serious emotional disturbance
  9. specific learning disabilities
  10. speech or language impairment
  11. traumatic brain injury
  12. visual impairment including blindness
  13. and other health impairment

Per the statute:

(3) Child with a disability.–
“(A) In general.–The term `child with a disability’ means a child–
“(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as `emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
“(ii) who, by reason thereof, needs special education and related services.
“(B) Child aged 3 through 9.–The term `child with a disability’ for a child aged 3 through 9 (or any subset of that age range, including ages 3 through 5), may, at the discretion of the State and the local educational agency, include a child–
“(i) experiencing developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures,
in 1 or more of the following areas: physical development; cognitive
development; communication development; social or emotional development; or adaptive development; and
“(ii) who, by reason thereof, needs special education and related services.

During our meeting with the committee last year, we were told that we’d have to focus on “other health impairment” since nothing else on the list really applies.  Although she wears DAFOs, her hypermobility is not significant enough to qualify as an “orthopedic impairment.”  Previously when fighting for services, like at the 3 year-old transition meeting, all we had was a nebulous diagnosis of “hypotonia” which is really a symptom, not a diagnosis, but at the time we didn’t know what was causing it.  Now at least we have a diagnosis – Little Sister has Ehlers-Danlos Syndrome.  We have a letter from a reputable genetics specialist stating that she will need life-long physical therapy to improve strength and avoid onset of arthritis.  It also documents her physical weaknesses.

Great, you’d think!  I have a detailed evaluation of Little Sister’s physical condition and a statement that therapy is necessary.  However, as we were told last year, this could all be written off as “medical” and not “educational.”  If they do not see enough evidence of this impacting her ability to learn, they don’t need to provide any services.  They’ll do their own evaluation to determine this.

Our problem is that there is a lot Little Sister can do for a short amount of time, but then won’t be able to repeat it even moments later.  She fatigues very quickly.  Another problem we had during the 3 year-old assessment was that they looked to see if she could do something, not the quality with which the task was accomplished.  Yes, she may be able to do a fine motor task, but they tended to ignore that she was struggling or not doing it appropriately.  She may have picked something up, for example, but many fingers were involved and her grasps were immature.  If this same standard is used during her upcoming evaluations, we’re in trouble.

Schools also do not seem concerned about her sensory problems, which if you read about our experiences in Disney World, you’ll know have become quite significant.  These are not going to come out during an evaluation process.  They have to be witnessed during regular life experiences.  Just wait until they have a loud assembly, a fire-drill alarm goes off, or she simply doesn’t get her way!  I’m told she is generally fine at school, but I did get to witness a typical Little Sister melt-down at school last week.  While I was sad that she was screaming, crying, and stamping her feet, I was secretly very glad her teacher got to see it.  What caused the tantrum?  There were two chairs of one style and one different one.  Another boy sat in the different one and she wanted that one, so she threw a fit.  That evening at her dance recital she refused to participate until the color dot she wanted to stand on was given to her.  We see this all of the time at home.  She threw a huge tantrum (that word probably isn’t even strong enough) a few days ago because Daddy gave her a bath instead of Mommy.  She doesn’t quite care that doing her baths is much harder for me.  Apparently it’s my job and changing the routine did not meet her approval.  I could go on, but you get the picture.  She probably isn’t going to be one of the “easy kids.”

Sorry for going on at length about stressing in advance of the meeting!  It’s not a good thing to stress during Girl Scout cookie season.  After a few thin mints, I thought it was better to write than continue eating!!  I know not much is going to happen tomorrow.  It’s a lot like opening arguments.  It’s a time to lay out the case and learn the process.  Then they’ll schedule evaluations, after which the real battle, I mean fun starts.

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