Submitted by Nessabear on Wed, 2006-05-31 21:12

I want to include a history with significant events so far. I have already forgotten when certain things occurred and I need to reference them from time to time. Hopefully this will let me keep track of things better. I'm going from memory here, so some of the dates will be guesses. November 2000Diagnosed with relapsing-remitting ms (the writer/editor/proof-reader in me wants to capitalise those words, but I'm taking a stand, small as it may be!). Symptoms were weakness and tingling in my right hand, which was particulary noticeable as my husband Glen (nick: Tig) and I were owner-building our house and doing lots of physical labour. After many weeks seeing a back specialist for chiropractic-type corrections to help what I suspected was a pinched nerve, he sent me for x-rays, found nothing, then referred me to a neurologist for an MRI. By that time, the tingling/numbness/strange sensation had spread all down my right side and felt like a band around the right side of my torso. The MRI plus history confirmed the diagnosis. In retrospect, I had probably had at least two episodes in the two years prior to diagnosis. One episode with weakness in my left hand and one that affected my vision. I had a course of oral prednisolone and three weeks off work. Episode seemed to pass. After my diagnosis, I suspected that my mum also had ms as it would explain a whole swag of mystery symptoms that had come and gone for her over many years.January 2001Started Rebif. Site reactions were fairly extreme, slight flu-like side-effects too. Tig and I were contracting for IBM and were working only three days per week so we could spend time finishing the house. The manager at IBM was extremely understanding and happy for me to take time off work whenever I needed to and happy for me to continue with just three days per week.March 2001 (?)Tig and I went to Fiji for a holiday. I remember I was riding a bike, swimming, kayaking so the ms was not a great problem at that time.August 2001Stopped Rebif to conceive. I think I had a mild episode soon after stopping the Rebif.November 2001Mum diagnosed with rrms.December 2001Fell pregnant. No ms symptoms during the pregnancy (it was wonderful!).September 2002Gave birth to our darling son Kai on the 8th. I breast-fed him so was unable to go back onto any medication.January - March 2003Started to have a lot of trouble walking (right leg started to get weak and knee sore). Also lost most of the vision in one eye, then as that one started to improve, lost most of the vision in the other. I could still see, but it was as though there were parts of the sight missing, patchy and blurry, as sometimes occurs with migraines. I had to withdraw from a Dip/Ed uni course that I was going to do as I just couldn't read. I spoke to a neurologist at the ms society, but there was nothing to be done as long as I was breast-feeding. I resolved to wean Kai by June.June 2003Started on Avonex (recommended by neurologist as I expressed my fear of needles and the site reactions with Rebif, so she thought one needle per week would be better than three - HA!). Started the Swank diet. Had terrible psychological trouble with the intramuscular injection and fairly severe flu-like symptoms on the day after the Avonex. Pretty much lost one day each week because of it. Symptoms continued to deteriorate. Had to stop driving (can't remember exactly when). Persisted with the Avonex for about a year.September 2003Had a course of IV steroids. I think there was a minor, temporary improvement of symptoms.December 2003I think I had another course of IV steroids, though not entirely sure of dates. Didn't seem to do much anyway.April 2004Moved from Bowen Mountain to Callala Bay. Dream house that we'd built (2 storeys) and property (extremely steep) no longer practical with my deteriorating symptoms. Callala Bay all flat!August 2004Stopped Avonex and started Copaxone.October 2004Started intermittent self-catheterisation.December 2004 (?)Neurologist advised that he thought the ms had become secondary progressive.PLACEHOLDERYet to complete this part of my history! Maybe nothing significant happened in this space!...I know we bought a mobility scooter sometime...will have to check the dates.December 2005Bought a wheelie walker as my walking was slightly worse. The right leg was extremely heavy and my right foot was dropping quite a lot. Also, my balance was not good (hadn't been for quite some time). The walking stick was OK, but the wheelie walker was much better as it let me move more easily and helped me to stop twisting my body so much. It also has a seat which is handy! At this point I should note that I had been wearing sneakers nearly every waking moment for quite a while as they helped protect my toes which I would often trip over or catch on furniture if I was in bare feet.April 2006Went on a great holiday to the Gold Coast which was a test for taking the scooter on the plane. No problems at all.June 2006Started blog on cpnhelp. No more entries required here! 

 Vanessa,

Your symptoms and mine are so very comparable physically right down to the numb torso.  I was diagnosed PPMS of 9 years duration in 2004 and stayed on Avonex for 77 injections, I believe it was.  I was "disowned" by my neurologist last Dec when I quit because it was by then more detrimental than effective.  My reactions were virtually identical to yours.   I have been on the protocol for over 21 months and am doing extremely well, having left behind me a trail of now useless tools for ambulation.

 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hello Vanessa, you are certainly getting the hang of this site pretty well, after your tentative start on ThisisMS!  Welcome here as well.  You are doing what I sometimes wish I had done when I first started treatment, but I didn't start posting anywhere until six months later and during that time I got so annoyed one day that I just deleted my attempt at a journal.

Please, when you have the time, continue to post some of this on ThisisMS because we are getting a bit thin on the ground over there at the moment and to many people with MS it is a starting point, once they move on from the national MS society sites.

Also, read through Rica's blogs  -  they are amazing.  Then move onto MS Willow.  Plenty to do..................Sarah

 

An Itinerary in Light and Shadow  Berger. Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi there,

Rica/katman (which do you prefer?): thanks for your support and thanks especially for the comment about leaving behind the useless tools for ambulation! That has put a smile on my face as I glance over at my ever-present wheelie-walker! I am hoping, but not expecting, that the antibiotics will help me too. I think this is the right attitude to take. I will read your blog with great interest and hope to 'chat' again soon.

Sarah: thank you -- again! I've only just 'met' you a couple of times and every single one, you are helping me in some way. I will definitely read Rica's blog and then Ms Willow's. I really only chose to keep my blog here because the interface is much easier to use (and, of course, I am intending to start antibiotics very soon). I have a background in technical writing for computers with a little experience in HTML coding, but I couldn't even figure out how to enforce a paragraph mark in the Journal section over on ThisisMs (of course, I don't have the time to experiment like I used to!). When I do have some time, I will look into it further and copy across anything that might be useful.

Vanessa :o)

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).