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Of what value is a diagnosis?

Hello,

This is my first post. I am 55y and think that I have probably had ms for 30 odd years. In my early twenties foloowing ‘flu-like’ symptoms and a period of phenomenal fatigue I spent a few days in bed having lost the use of my legs. I have had nothing as severe as this in the intervening years but have had frequently recurring and transient episodes of numbness and tingling in various parts of my body which can last a couple of days to a few weeks and occassional blurring of vision in recent years when I am extremely tired (being tired all the time is my usual state) or after unusual exercise or heat. Over the past year the fatigue seems to have become a permanent feature which can make me feel very low. I also have frequent UTIs ( 3-4 a year for the past couple of years) and very recently when I get the sensation to open my bowels it is very urgent and occassionally I haven’t quite made it to the bathroom in time. At the weekend I did a small bit of decorating a fire-surround and was almost immobile the following day. My right leg felt it alone had run a marathon and it took all my concentration and energy to limp along at a snail’s pace. This gradually got better and now four days later the leg is 90% back to normal.

My gp mentioned last year that I might have ms. I have not since returned to that gp. For years, I have thought myself that I might have ms but didn’t want a diagnosis as while I was well enough I couldn’t see what benefit to me there would be from a diagnosis. However over the past couple of years the fatigue, aches and pains, numbess, tingling, heaviness and other body sensations have I think contributed a lot to a very serious depression. A very good and long standing friend who says she has thought for years that I have ms but didn’t mention it is now trying to get me to go and be tested but am I right in saying that even if I am diagnosed there is nothing that I can take/do that will affect its progression? I am in quite a quandary about it all. Comments from other people’s experience would be very helpful - especially how having the diagnosis helped you.

Thank you

Mizzie

Hi Mizzie,

Early diagnosis usually means access to the disease modifying drugs (dmd’s). These drugs are proven to reduce relapses in frequency/severity. Each relapse(ms attack) you have has the potential to damage the nerve fibres. Once the nerve fibres are damaged they cannot be repaired. (not at the moment but research is being done). Once the damage is done then disability can happen. The more attacks you have - the more damage is done.

Dmd drugs are for relapsing remitting ms(rrms). There are 4 types of ms. The dmd’s do not work on the other types. They can slow down progression so it’s worthwhile getting a diagnosis if you are rrms.

If you have the other types of ms then you will just get help with symptoms.

Because your symptoms get better - it sounds more like rrms to me. The other types don’t usually see improvement.

On a positive note - your ms sounds pretty mild at the moment if you feel you have had it for this long.

The dmd drugs are to slow progression so they may be a good idea. Once the damage to nerve fibres is done then there is no repairing them (medical science has not got this far but research is being done in this area)

Depression is common in ms so please see your gp for some help with this.

Take care and i hope this has helped a little bit.

Teresa.x