Category Archives: Tysabri

MS Cog Fog or just getting older?

Something occurred tonight that made me think and REMEMBER that this topic was discussed on a  thread of an MS FB group I belong to in April of 2014.  I revived it to see how many others have done something like this.
My wife found these in the fridge tonight. Now how can i forget that i set these down tonight in the fridge but i can remember the month and year of this thread? *SMH* Must be the new lesion they found my last MRI. 🙁



Please Provide Qualified Patients Access To Medicinal Marijuana

Senator Teplitz,

As a former High School mate of yours, I was pleased to see you as a sponsor of SB3 (An Act providing for the medical use of cannabis in the Commonwealth of Pennsylvania).   March is Multiple Sclerosis Awareness Month.

I was hit with the Diagnosis of the incurable disease of the central nervous system called Multiple Sclerosis in 2008 after a week of excruciating pain and blurred vision and then going blind in my Right eye (Optic Neuritis) .  A 3 day drip of Solumedrol and 10 days of a steroid taper and 8 months later my vision returned to about 95%.  This initial diagnosis was devastating but the issues continued including, foot drop, loss of rt hand functionality, right side neuropathy, pain, fatigue, spasticity, depression, bowel and bladder issues, balance issues, muscular issues and the list goes on.  Needless to say, my life has become a daily struggle to work, afford medical devices, etc.  I continue to go on a downward slope despite trying several different DMDs (Disease Modifying Drugs) including the one called Tysabri which has the highest efficacy.  I get Tysabri every 28 days in the form of a chemo type infusion.  I also take other pill drugs on a daily basis.  These can only slow progression as there is no cure and quality of life continues to go downhill.  There are others who have it far worse than I do.  Medical cannabis can allow a reduction in pain, spasticity and can allow elimination of drugs such as Hydrocodone, OxyContin, Lyrica, and others that are far worse for the body.

I urge you to press forward quickly with SB3 but not without reading and considering further information as to the correct delivery / treatment methods of medical cannabis.  These include vaporization / smoking.  There is too much risk and unknowns with the oral (edibles & oil) format.

I’m writing in regard to Senate Bill 3, which seeks to provide qualified patients with access to medicinal cannabis preparations from state-licensed dispensaries.

Passage of this act will not alter or interfere with already existing state laws discouraging the non-medical, recreational use of marijuana. It will offer qualified patients state-sanctioned access to a therapy may offer them significant benefits.

Twenty-three states and the District of Columbia already offer similar patients protections. Statewide,  84 percent of Pennsylvanians say that the physician authorized use of marijuana ought to be legal, according to a 2014 Franklin & Marshall statewide poll.  Moreover, in December Congress and the President signed off on language barring the Justice Department from interfering in the implementation of statewide medical marijuana programs. This language protects regulated programs like the one proposed by SB 3.

Clinical trials acknowledge that marijuana possesses therapeutic efficacy. A recent review of several of these clinical trials assessing cannabis, published in The Open Neurology Journal concludes, “Based on evidence currently available the Schedule I classification (for cannabis) is not tenable; it is not accurate that cannabis has no medical value, or that information on safety is lacking.”

That said, I am concerned that SB 3, as presently written, fails to adequately meet some patients’ needs. Specifically, it prohibits qualified patients from consuming medical cannabis by “smoking” — a provision that will likely promote the production of cannabis-infused edible products or oils, but may potentially limit patients access to herbal preparations of the plant.

Oral preparations of cannabis such as edibles and oils possess delayed onset compared to inhaled herbal cannabis, making these preparations less suitable for patients desiring rapid symptomatic relief. Further, because of this delay in drug effect, patients consuming cannabinoids in this manner have a much more difficult time adequately regulating the substance’s dosing. Patients may wait well over an hour only to discover that they have taken an insufficient dose to provide effective relief. Or, conversely, they may discover that they have consumed a far greater dose than necessary – resulting in prolonged periods of dysphoria.

Finally, the oral administration of ingestible cannabis products is associated with significantly greater bioavailability than is inhalation – resulting in more pronounced variation in drug effect from dose to dose (even in cases where the dose is standardized). For these reasons, I encourage lawmakers to amend this language so that decisions regarding the types of medical cannabis formulations one may legally possess and the manner in which one chooses to administer it be left up to the patient.

I also encourage lawmakers to extend patient protections to include those diagnosed with HIV/AIDS and/or neuropathy. Clinical FDA-approved trials document that cannabis is safe and effective for the treatment of these conditions. These patients who may benefit from medical cannabis access can not, in good faith, be denied this alternative treatment option.

Please consider these changes that would further expand patients access and choices.



JCV Test

121914-JCVTest – Negative again!  Tysabri continues!

Although my index went from .07 to .11 – its not a huge jump and still negative.  We still don’t know if the Titer Index value plays a huge role or not.  Some Dr’s seem to think so.

My 58th Tysabri infusion is scheduled for 1/16.   That makes 4.5 years (58 divide by 13 infusions per year) on Tysabri.

I will have my MRI (its been about 2 years) in the next 2 weeks to check for lesion / Brain/Spine changes.  HATE the MRI!


#51 -Beating the Heat

Summer’s here and the time is right to avoid the heat!  Especially for MS suffer51ers.

I Had infusion # 51 today and a blood draw for regular stats and levels as well as the JC Stratify with Index
to test for the JC Virus which can indicate unfavorable titer levels and make you think twice about taking Tysabri.  Higher levels can mean higher risk of getting PML (Primary multifocal leukoencephalopathy).  This rare brain virus that we are at risk of getting does not seem so rare

#49 – and JCV Negative

Not much more to say but Infusion #49 and JCV results are a Negative [Titer.10].  SPMS is not being kind to me but there are others far worse and have the scary position of being JC + with a high Titer.  I’m not sure what I would do at this point.  So many come off of Ty and switch to a different drug, have a relapse or reaction and are back on #Tysabri again.  These are not easy decisions to make any boat you are in.  They say MS is not a death sentence but recently 2 or 3 MS patients I’m aware of have died.

Mobility seems to be getting worse and driving or getting into the car is a constant struggle.   Mental acuity is still there thank goodness! Tiredness has a whole new meaning these days but yet somehow, I’m awake writing a blog at 3 in the morning.  Stress remains high and difficult to deal with.  My 1st Therapeutic massage is the 16th so hopefully that will help.  Maybe I can even start driving to PT again.  🙂

Infusion 49

Tysabri Infusion #46 – and Saline Shortage!

Today was Tysabri infusion # 46 and boy did I need it.  My knees have felt like they are being blow torched every time I sat or stood.  I took special notice to the tiny bags of saline that were being used (read: rationed) and asked what the deal was.
Turns out there is a US hospital shortage ––sector.html;_ylt=AwrBEiKkOOhSBmoAFufQtDMD

Tysabri # 35
Tysabri # 46