Tracking results

There is a huge amount of data floating around the web about the effectiveness or otherwise of the CCSVI treatment on MS patients. I know that prior to my own operation, I found it difficult to work out what to believe. Videos and comments, both for and against, abound. That was why I started this blog, but I guess for some of you reading this, my thoughts are also part of the clouds of information. Who or what do I believe?

That is why I was delighted to come across the site CCSVI tracking. It hopes to build up a picture by collating data from people who have had the procedure done around the world and tracking what happens to them over time. Is there an improvement in symptoms? Does it last? If so, how long? This should begin to answer the burning questions.

So it is important that as many people as possible who have had ,or are going to have the procedure shortly , take part. Negative and positive results are all important in creating as accurate a picture as possible. It will require an ongoing commitment of about 15 minutes per month. Please find the time.

Because we are all worth it.

Don't try to do too much

Is there anyone out there who listens to the advice they are given? Especially the advice they give themselves? Having been ill for a long time, and had an operation just a month ago, I really should have been building up my activity levels gradually. So far I've been careful to split my daily walks into chunks, listening to my body and stopping before I got too tired. But I've been feeling so good,and it has been so great to go back to work, that I haven't been pacing myself as I should. I started back at two afternoons per week and that was fine. I was coping well, and adding a extra afternoons was going OK. Hey, Ma, look at me, top o' the world.

Then things got really busy. Instead of continuing to pace myself, and wanting to feel useful again, I kept going. I was enjoying being part of a team again, rather than living the isolation that MS imposed. What's a few more hours?

So today, after nearly two and a half full days at work,without a day off in between, my body called time.  Heck, I've had too long of not being able to do anything, that the concept of doing too much is actually pleasurable.

It is good to be normally tired again. No cog fog, no going virtually comatose. MS exhaustion is so different from that experienced by just over doing it. I will sleep like a log tonight. But I will wake up rested and refreshed. It is a long time since I could say that.

Sue has her mojo back

This is something that can be skimmed over in "living with MS" guides, but is a very real issue for those of us with MS, and their partners. Apart from the psycological problems associated with living with a chronic progressive incurable disease, and the practical ones associated with poor bladder and bowel control, fatigue and spasticity, loss of sexual function in itself is often glossed over.

Numbness and loss of sensation  below the waist means just that. No amount of lubrication and extra stimulation will help if the messages just aren't getting through. Loss of physical intimacy in a relationship is one more thing to chalk up to the MonSter.

As the sedation wore off after my operation, Robin stroked my feet, and I was able to feel his touch for the first time in a long time. He continued, touching my ankles and calves, joking that further exploration should be left for another time.

Five weeks after my operation, I am pleased to announce that full sensation has returned.

Sue has got her mojo back.

Kuwaiti experience

For those of you would like to find out a bit more about CCSVI around the world, this is a YouTube video of a presentation by Dr Tariq Sinan. Some of it is quite technical, but it is worth persevering.

Many MS patients will empathise with the patient in the video. Dr Sinan shows many examples he has found in his practice.

For those still unsure about CCSVI, Newton may not have made his declaration, but apples are still falling downwards.
 
Kuwaiti experience

Oliver Heaviside, my hero.

No, this is not going to be a long and convoluted discussion about mathematics. I just came across a wonderful quotation which applies very much to the current situation with CCSVI.

While neurologists seem to be trapped in some form of groupthink that stops them from looking at this as an opportunity, and vascular specialists are working on making the procedure safe and routine, the link between CCSVI and MS remains unproven. But as more and more of us have the operation and see benefits, the pressure to make it widely available increases.

And so the quotation. "I do not refuse my dinner simply because I do not understand the process of digestion."

I opted to have my dinner too, how about you?

Poland Treatment centres under threat

 Sometimes something arises which challenges the medical orthodoxy, and the proponents are ridiculed and excluded. This has happened with everything from vaccination, through bacterial infection, anaethesia to the link between stomach ulcers and a bacterium. Don't let this happen with CCSVI.

Please read the conversation on This is MS, and if you can, send an email in support.

"A neurologist, Dr. Danuta Ryglewicz, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to wiercin@gmail.com, so I can collect them and use them to confront both with them."


Thank you

One month on

Yesterday was four weeks on from my angioplasty, so I thought I'd do a quick summary of my status, remembering that prior to the operation I was EDSS 5.5, heading for 6, and giving up work.

• My head is still clear and MS fatigue has gone. No longer take modafinil to get through the day.
• I have started to return to work part time, gradually increasing my hours as my body gets used to the increased level of activity.
• Walking without a stick. Can now manage 3.5 kilometres with rest stops
• Walking speed near normal. I can now pretty well keep up with Robin.
• Gait near normal. Described as looking like someone recovering from a strain or sprain or similar injury
• Occasional visits from the MS hug, but of less severity and shorter duration than before. Also confined to lower ribcage, whereas previously would spread up ribs to lower neck, affecting swallowing.
• Bladder stable. Tolteridone stopped. Can actually wait a few minutes before going to the loo when I get the urge.
• Still taking carbamazepine for trigeminal neuralgia, dose as before, but timing no longer as critical. Taking my tablets a little late does not immediately trigger an attack. Cold on my neck still does though, scarves keep things under control. Constant level of background pain has gone.

• Still taking citalopram for mood control. Not just depression, but all emotions on a fine trigger without it, eg get irritated and snappy at the slightest thing.
• Sleeping erratically, insomnia getting to be an issue. Perhaps making up for all those days I slept for 18-20 hours.
• Vivid dreams
• Warm feet

I think this covers everything. A lot has changed since September 22nd! Let's hope it keeps up.