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Fed up :-(

Hi everyone I’m struggling with knowing what is classed as a relapse And what is classed as sensory symptoms . Been having really problems with neck and top of spine , Such pain and can pin point the exact spots , Trouble is been getting real bad pins and needles in both arms And I’m waking up every night with numb arms , more so my left seem to be now developing a permanent tremor in my hand . Does only complete loss of use class as a relapse ? Or is this something that should be report. Any advice would be greatly recieved . Sarah x

Sorry you’re feeling fed up Sarah. I’m also confused about this! However, I’ll just tell you that when I saw neuro prior to diagnosis I told him about my current symptoms (loss of balance, facial tingling mostly) and about a spell of dizziness and pins and needles in hands and numbness in hands and arms at night which gp at the time said was caused by muscle tension in my neck. In my diagnosis letter to gp, the neuro has cited these two separate incidents as two separate relapses (and I didn’t have complete loss of use in either.) Don’t know if that’s any use at all sorry!! I’ll wait with interest with you for someone more knowledgeable to come along (I’ve only had my diagnosis less than a fortnight!) x

Hi Sarah,

I think a relapse is defined as the onset of new symptoms lasting longer than 24 hours and without the presence of infection or fever. If you are concerned speak to your GP/Nurse and see what they think, sometimes just talking it all through with a health professional can make us feel a lot less scared and it never hurts to have new symptoms recorded. It is all a bit of a minefield! It is possible to have sensory only relapses - I have!

Hope that helps and you get things sorted soon :slight_smile:

Laura x

Thank you sunflower and Laura that does help a lot . Its been troubling me for a while now , and it is really The not knowing , its all very confusing as had other Flares of new symptoms before , I got asked if I can still Move it then got told its sensory ,but I can not take steroids For relapses so I don’t know if that’s why it’s the answer I Get when I asked for advice from the nurse last time . So I have never understood what’s classed as what . Affecting my use of hand and sleeping is a nightmare . Think it’s time to see my GP now then . Thank you both . Sarah x

I agree with Laura, but would just add that it’s new symptoms OR a recurrence of old symptoms.

Relapses can be sensory (affect sensation), motor (affect how you move), or both. Symptoms don’t have to be severe or disabling for it still to be a relapse, BUT most neuros won’t prescribe steroids for a relapse that is sensory only, because the benefits won’t usually outweight the risks & side-effects.

Steroids have not been shown to have any positive effect on the long term course of the disease, so if your relapse is non-disabling, you might be better off giving them a miss.

The only reasons for keeping a running tally of the number of relapses are (i) it might make you eligible for DMDs, if you weren’t already, or (ii) to monitor how well an existing DMD is working, and consider whether a switch is needed.

It’s not urgent to report it, if you’re coping OK, and not actively seeking steroids. It would be a good idea to get it on record it has happened, but it’s not a medical emergency.

Tina

Thank you Tina so much that’s a great help . I had a bad reaction to the IV steroids on my First big relapse so I’m not allowed to take them. So I have been left wondering on what’s what and When best to report these things . But that’s that very Good point reporting them may help as I am not Yet on DMDs as yet , and I seem to be having new Symptoms . I will report it now . Thank you Sarah x