This Is MS Multiple Sclerosis Community: Knowledge & Support

Yesterday ,Patient with Als (Member in another forum) told me that she opened jugular veins, two months ago, now felt improvement in swallowing and movement .

Also, i found this topic about the experiences of other with ccsvi
http://www.alsforums.com/forum/general- ... ccsvi.html

our neighbor was dx with als in january 2009... he died last week at age 53. it is a cruel disease.

I am so grateful to have found this thread. I was diagnosed with MS 25 years ago (I am now 43), and my mother and cousin also have MS. My niece has symptoms, but is undiagnosed.

Last December, my mother and I went to Sofia, Bulgaria where we were tested and (very successfully) treated for CCSVI. While we were there, I learned from my surgeon that they had also treated 8 ALS patients, and all but the 2 most advanced cases showed immediate improvement in symptoms.

Then in January my mother's sister was diagnosed with ALS. Because of the information we heard in Bulgaria, she is going to be tested (and hopefully treated) for CCSVI (she can get this done in N America, rather than having to travel to Europe). Until now, I had not heard of any other facility finding a link between ALS and CCSVI, so the information about Dr Sinan in Egypt definitely gives me more hope.

Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link.

Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link.

Amyotroph Lateral Scler. 2010 May 3;11(3):289-92.

Amyotrophic lateral sclerosis, physical exercise, trauma and sports: results of a population-based pilot case-control study.
Beghi E, Logroscino G, Chiò A, Hardiman O, Millul A, Mitchell D, Swingler R, Traynor BJ.

Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy. beghi@marionegri.it

Abstract
Our objective was to investigate exposure to physical exercise and trauma in patients with amyotrophic lateral sclerosis (ALS) compared to the general population. Previous studies in this area have yielded conflicting results. Using population-based ALS registries from Italy, the UK and Ireland, newly diagnosed patients with definite, probable or possible ALS were enrolled in a case- control study with two age- and sex-matched controls for each patient. Source, intensity and duration of physical activity and history of trauma were recorded. We here present the results of a pilot investigation. We studied 61 patients and 112 controls. Forty-one per cent of cases and 17.0% of controls (p = 0.001) had blue-collar occupations; 13.1% versus 3.6% reported strenuous physical activity at work (p = 0.05). Compared with controls, ALS patients had a longer exposure to work-related (10.7 vs. 7.3 years; p = 0.02) and sport-related physical exercise (9.6 vs. 5.2 years; p = 0.005). Three patients (0 controls) reported professional sports (p = 0.04). Traumatic events were similar. Blue collar occupation (OR 4.27; 95% CI 1.68-10.88) and duration of sport-related physical exercise (OR 1.03; 95% CI 1.00-1.05) were independent variables in multivariate analysis. We concluded that ALS is associated with physical exercise but not with traumatic events.

PMID: 20433412 [PubMed - indexed for MEDLINE]

Amyotroph Lateral Scler. 2009 Aug;10(4):205-9.

ALS in Italian professional soccer players: the risk is still present and could be soccer-specific.
Chio A, Calvo A, Dossena M, Ghiglione P, Mutani R, Mora G.

Department of Neuroscience, University of Turin, Turin, Italy. achio@usa.net

Abstract
We previously found an increased risk for ALS in Italian professional soccer players actively engaged between 1970 and 2001 (n =7325). The present study extends previous work with a prospective follow-up of the original cohort to 2006 and investigates the risk of ALS in two other cohorts of professional athletes, basketball players (n =1973) and road cyclists (n =1701). Standardized morbidity ratios (SMRs) were calculated. Among soccer players three new cases of ALS were identified, reaching a total of eight ALS cases (mean age of onset, 41.6 years). The number of expected cases was 1.24, with an SMR of 6.45 (95% CI 2.78-12.70; p<0.00001). The risk of ALS was higher for careers lasting >5 years, for midfielders, and for players engaged after 1980. No basketball player and no cyclist developed ALS. This prospective extension of the Italian soccer players cohort survey confirms the highly significant risk of developing ALS, the young age of onset, the dose-effect risk and a predilection for midfielders. The absence of ALS cases in professional road cyclists and basketball players indicates that ALS is not related to physical activity per se.

PMID: 19267274 [PubMed - indexed for MEDLINE

Neurodegener Dis. 2011 Feb 23. [Epub ahead of print]

Spinal Cord Herniation: A Missing Piece in the Pathogenesis of Amyotrophic Lateral Sclerosis and Multiple Sclerosis?
Manara R, Citton V, Nardetto L, Semplicini C, Burlina A, Trevisan C, Argentiero V, Baracchini C.

Neuroradiologic Unit, University Hospital of Padua, University of Padua, Padua, Italy.

Abstract
Background: Idiopathic spinal cord herniation (SCH) is a rare and often misdiagnosed condition characterized by displacement of the spinal cord through an anterior defect of the dural sac. This condition determines continuous focal trauma of the spinal cord, causing slowly progressive myelopathy. The peculiar MR scan findings, particularly sagittal T(2)-weighted images, allow its recognition. Objective: Herein, we report 3 cases of SCH and suggest a possible association with trauma-related neurodegenerative or chronic inflammatory diseases. Methods: We reviewed the clinical files of all patients admitted to our hospital with a history and signs of progressive myelopathy (paraparesis and/or lower extremity hypoesthesia) who were diagnosed with SCH by MRI. Results: We found 3 female patients (37, 69 and 68 years of age) with a diagnosis of SCH. Two of them presented with concomitant, relatively rare disabling neurological diseases, namely amyotrophic lateral sclerosis and multiple sclerosis. The third patient underwent surgery and gradually recovered over 6 months. Conclusions: Persistent central nervous system trauma due to idiopathic SCH might provide an unexpected hint about the pathogenesis of amyotrophic lateral sclerosis and multiple sclerosis.

Copyright © 2011 S. Karger AG, Basel.
PMID: 21346318 [PubMed - as supplied by publisher]

We report here that motor axons undergoing Wallerian degeneration show an increase in chronaxie and changes in excitability
largely similar to Type 1 abnormalities found during the timecourse
of ALS (Kanai et al., 2006; Vucic and Kiernan, 2006).
Our data suggest that a gradual decrease in functional ionchannels
precedes conduction failure and axonal disintegration during Wallerian degeneration. It is therefore possible that asimilar ‘acute channelopathy’ is reflected in excitability measuresduring axonal degeneration in ALS. This view is supported by thefact that Type 1 abnormalities in ALS appear maximal duringdisease stages when the largest number of axons degenerate asalso observed in ALS (Winhammar et al., 2005; Vucic and Kiernan,2006). Thus the contribution of degenerating but still conducting
axons to excitability measures should be taken in account when
interpreting excitability measures in disorders characterized by
axonal degeneration.

he was seeing an astrophysicist with Lou Gehrig's.

Agar's research demonstrated that fALS is caused by two synergistic properties of the protein superoxide dismutase, creating toxic levels of the protein in motor neurons. "We discovered that increased protein unfolding and the propensity of the proteins to aggregate, (to clump together) are the major factors in the familial form of ALS," explained Agar.