Clinic Visit, Baclofen and Symptoms Update

 Hello,

I realise that there have been quite a few Symptoms Update posts from me of recent, and I wonder if that in itself is an indicator of a change in my rate of progression, a change in my perception of my progression, or if there is some other factor. I dont suppose I'll know!

Anyway - earlier I had my bi-annual appointment with the HSP clinic at the National Hospital for Neurology and Neurosurgery in London. Travel for this appointment was much easier and much less interesting this time, because it was a telephone appointment!

We generally talked around my symptom changes (more on that below) and about what would be the right change to spot that would warrant me starting to take Baclofen. It appears that this is a bit of a balancing act. It was suggested to me that Baclofen can be used to make me feel more comfortable, indicating that I shouldn't start taking it until I begin to feel some level of discomfort. Looking at various websites Baclofen works by reducing the transmission of nerve signals, thereby reducing any underlying instructions to tense. It appears that many people are affected by side effects from Baclofen, and it seems there is a three-way balancing act:

• Taking enough to cause the muscles to allow themselves to relax
• Not taking so much that the relaxation is more than is wanted
• Balancing these two against negative side effects.

It would seem that if you take Baclofen an hour or so before doing stretches then these stretches would be more beneficial as the Baclofen gives the muscles a chance to stretch longer/deeper.

An initial dose might be 5mg (half a tablet) once a day, so that the body can get used to this new drug, and then increasing the dose up to perhaps 10mg three times a day. The maximum is 100mg over a day, so there is plenty of variation possible in working out the best approach, and when to take those doses in order to get the most out of it.

We talked in general terms about my stretches, and I described that I have been modifying my stretches depending on which muscles feel stiffest. It is probably a good idea to have a review with the physiotherapist, just to make sure that I'm still doing the right sort of thing.

On the stretches front, I said that when I went camping over the summer I didnt do my stretches, and that by the end of that holiday I was starting to feel some discomfort in my legs, particularly my calf muscles. They were feeling tight and uncomfortable. Once I finished camping I re-started my stretches and the discomfort has gone away. It is my view that my stretches are really important to keep my mobility going as long as possible. 

I also explained about the level of activity which I do, and how I do need to stop for a rest every now and again, and I feel I may be on the verge of needing one walking stick. Essentially HSP isn't stopping me do anything I want, sometimes it takes me a little longer to do it. (I noted that I cannot really run, but equally I don't really want to run either). I also think that keeping active and moving about is important in keeping my mobility going as long as possible.

The general conclusion from this chat was that I seem to be doing the right things. Lower back pain was mentioned, which is something which many suffer from. The suggestion was that the lower back pain may come from your body having to use different muscles to walk as mobility decreases and legs become stiffer, so that is another thing for me to look out for. I was advised to keep an eye out on my posture whilst sitting. This is something I'm doing anyway because my job involves using a computer all day, and working at home during coronavirus, has meant that I've reconfigured my desk to be better, and I've bought a better chair to use. Sitting posture has also been mentioned to me before, back at previous consultations, and we pick up on that in Pilates as well.

Summary: Still not ready for Baclofen, Review stretches with Physio, Keep active, Keep stretching, Posture!