Information you need to know
I am going to tell you information that I think is important. One is about your consultant and the other refers to multiple sclerosis and the two are linked.
This is information that my consultant Professor Giovannoni talks about in his blog and I feel it is vitally important that other people know this. It’s a bit of a no-brainer or a ‘what do I need to know article’.
A good consultant
If you are reading this post then the chances are that you have MS. Or maybe you have a relative or a friend of someone who has MS. The person with MS sees a consultant on a regular basis regarding their problems with MS. A neurologist might have diagnosed you, and perhaps a different neurologist is now treating you. Which is the better neurologist with the right skills?
Find a good neurologist
A neurologist can specialize in dementia, epilepsy, chronic pain management, or multiple sclerosis and there are a host of other specialities as well. It is vital that your neurologist/consultant has specialist knowledge of your illness. I have multiple sclerosis and going to someone who has little or no knowledge of this disease would be a total waste of time; this does happen.
The treatments avaiable for multiple sclerosis are increasing all the time. This is information a good consultant does need to know. Ask what information they do know, maybe you need to find someone who specialises in MS.
If you are not happy then talk to your GP. Knowledge is progressing fast; the list of drugs that can be prescribed is growing and changing all the time. It is up to you to ensure your neurologist has the right skill set.
The Iceberg effect
We all know that only 1/10 of an iceberg is above the waterline. Check this next time you drop an ice cube into your gin and tonic.
Progresion of MS
MS is an invisible disease. All the time it is attacking the myelin sheath and your body is trying to repair the damage. Suddenly you will have a relapse. The brain cannot find a route to pass the messages because of damage to the existing pathways. OK, this is a very simplistic view of MS, I hope it conveys the idea about progression of MS.
A relapse is the moment when MS is there for you to see but it has been steadily building up to this moment.
So why am I saying this?
The moment you are diagnosed with MS the consultant should have sufficient knowledge to start treatment immediately. If not find out why not. Don’t take ‘No’ for an answer.
Treatment will slow down or even contain the progress of MS. There is no drug that will cure you of MS but there are drugs that are very efficient at reducing the progression. Progression damages the brain, optic nerve or central nervous system.
One day a drug will be found that can stop MS, be a cure for MS and another drug that will repair the damaged myelin so that the effects of multiple sclerosis will disappear. I will be able to drive again, throw away my rollator and consgn my trusty mobility scooter to the potting shed. Haha, I wish 🙂
Sadly I don’t think it will happen to an old git like me but certainly there is hope for younger people who have been diagnosed with MS.
Hi Patrick, if you have SPMS why were they looking for inflammation? I thought this was seen more in early MS and RRMS. So do they actually count the lesions to prescribe for SPMS? So confusing. You could have one bugger of a lesion and several relatively quiet ones surely.
I’m afraid I cannot argue the whys and wherefores. Even with SPMS you can have active lesions in brain and spinal cord and inflammation is destruction on the myelin sheath and they are looking for neural filaments in the spinal fluid. Considering I have had MS since 1972 and not in a wheelchair yet then the lack of active MS does not come as a surprise.
I did not know about these protocols when I asked for the off-label cladribine. Hope to get more info and if MS trial for off-label cladribine gets off the ground then might go for that. At the moment I feel as if I’m in no-mans land