This Is MS Multiple Sclerosis Knowledge & Support Community

Jen are you seeing Amir?

EJC wrote:Jen are you seeing Amir?

Yes EJC, sorry forgot to say in my post

Well start your own thread and document how and where the improvements come. All the ups and downs.

The more the merrier!

Jen, so encouraging to hear about motor improvements so early in treatment. Are you doing physical therapy as well to rebuild muscle or improve gait?

Thekla wrote:Jen, so encouraging to hear about motor improvements so early in treatment. Are you doing physical therapy as well to rebuild muscle or improve gait?

I have recently completed a rehabilitative physiotherapy course specifically to help improve my walking following treatment for CCSVI and Nutcracker syndrome. I started TMJ treatment 6 weeks into the course. My scores (BERG scale) improved during this time from 25/56 to 48/56 in 3 months. I still do the exercises at home having now been discharged.

Emma has started a similar course, although being at the beginning right now and combating 15 years of muscle wastage we're still at the stretching stage before any genuine exercise is considered.

Facebook appears to have closed my account!
We all may have to migrate to an alternate system where neither Facebook nor its cronies can ban free speech.

Not just me then.

If you were a conspiracy theorist you might even think Big Pharma were chasing you!

I did just read of someone trying to email a friend in the UK and the email was blocked due to objectionable content. She selectively deleted various rants and once references to ccsvi and against big pharma were gone, it went through, no problem. Disconcerting.

October Update.

Periodically, Emma completes an on line questionnaire produced by Amir to track her progress. This is quite lengthy and is filled in initially at or during the week of your first consultation.

Each time you subsequently complete it, you are not aware of your previous answers, so it is blind.

From these questionnaires, Amir compiles graphs which produces a simple pictorial representation of any improvements or worsening of symptoms. This is Emma's - The timeline is detailed on the graph itself.



The increase in sinus issues is courtesy of a sinusitis problem Emma developed earlier this year and is still battling with.

Emma has been waiting two years to get Neurophysiotherapy to combat her muscle wastage issues, this started a little over a month ago and will solve the muscle weakness issue highlighted in this graph. A year ago Emma would not have been able to exercise, now she can. We expect her walking and gait to improve over the next 12 months.

The improvements are quite far-reaching and impressive. I've found that once anything really improves, the rest seems more manageable, maybe because I expect it also to improve and hope makes life better in general. Is Emma using a vibroplate to rebuild muscle? I haven't been able to get therapy approved, but a fitness studio just opened in our building and I got the cheap membership (without sauna!). I am hoping to build some leg/core muscles there.

Emma isn't using a vibroplate, she's rehabilitating first. Simple massages of tendons and muscles that have been unused for years are proving very good indeed.

We're off this morning to join a fitness centre that has classes especially for MS sufferers designed to keep/build muscle tone.

small study-but note it mentions better blood flow to the brain,

Cranio. 2011 Jan;29(1):57-70.
Neuromuscular orthotics in the treatment of craniomandibular dysfunction and the effects on patients with multiple sclerosis: a pilot study.
Heit T.
SourceMultidisciplinary Association for The Study of Cranio-Cervical Pain, Edmonton. scotiasquare@interbaun.com

Abstract
The purpose of this pilot study was to identify, measure and document an effect on the subjective multiple sclerosis symptoms and compare it to any objective data changes in the neuromuscular system of the head and neck, following the correction of the jaw position using a neuromuscular orthotic. The hope is to provide clinical evidence of improvement in the disease long-term without relying on the subjective evidence of remissions and exacerbations reported by the patient. The evidence found in the current pilot study measured improvement of head position, jaw position, jaw function, and airway in the neuromuscular bite position, which correlated with the improvement of subjective symptoms of craniomandibular dysfunction and multiple sclerosis. Studies show that the bite affects blood flow in the brain, which may explain the improvement of the patients in the current study.

PMID:21370770[PubMed - indexed for MEDLINE] Publication Types, MeSH TermsPublication TypesComparative StudyMeSH TermsAdultAxis/radiographyCephalometryCerebrovascular Circulation/physiologyCervical Atlas/radiographyCone-Beam Computed TomographyCraniomandibular Disorders/physiopathologyCraniomandibular Disorders/therapy*Dental Occlusion, CentricFemaleHead/anatomy & histologyHumansJaw Relation RecordMaleMandible/pathologyMandible/physiopathologyMandibular Condyle/radiographyMiddle AgedMultiple Sclerosis, Relapsing-Remitting/physiopathologyMultiple Sclerosis, Relapsing-Remitting/therapy*Neck/anatomy & histologyOdontoid Process/radiographyOrthotic Devices/classification*Pharynx/pathologyPharynx/physiopathologyPilot ProjectsPosture/physiologyTemporomandibular Joint/radiographyTomography, X-Ray ComputedVertical DimensionYoung Adult
LinkOut - more resources

Blossom, could I ask if you could post a link to this paper?

Thx, PN

I think this is it: https://www.ncbi.nlm.nih.gov/pubmed/21370770