I have been put on Avonex thats good news. My foodrop has worsened and also my spasms in my right leg has got worse. I do have an appointment this month with Neuro. I think I am having another relapse. Not sure or it that it has got worse. Keep worrying at the back of my.mind because of my legs and foot that I will be in a wheelchair.
I was wondering how long it usually takes for steroids to kick in. I am on a five day course of 500mg methyl prednisone. Yesterday I had enough energy to do a few jobs, but come 6 o clock after being watched by hubby , I was ready for killing him and going to bed. I felt horrendous. My own fault I know, as I had a bit more energy that normal and abused it.
Last night though, I started with the trigeminal nerve pain in the left side of the neck which went up to my eye. Exactly how this all started in myt right side back in January. I took gabapentin at bedtime as I couldn't get comfy in bed. It seems to have subsided this morning, but low and behold, left facial numbness. So I now have a completely numb face....if only it worked on wrinkles lol.
Another question, if I might, as I am on a roll. Is it normal to have a number of different symptoms each one following the next during a relapse, ie, one symptom one week, more the week after and so forth?
My worry is that at the moment, there is not much of my body left at the moment that is not numb and the speed at which I have arrived at this point is scary, without the added wait of another three months of waiting for my lumbar puncture and the 6 weeks wait for the results. I feel like I am having to wait to long to discuss DMDs..... Arrghhhh
Sam
Hi Everyone
Aaaargggghhh. I miss you lot so much. I have recently joined action for ME forum to chat with people in the same boat as me. It's nowhere near as friendly, informative or welcoming as here!!!!! The forum is so slow. Got so much stuff to get off my chest as well as positive advice to give etc etc, but just don't know where to take it.
Anyway, be all and end all is this.... I miss you guys, so please please carry on doing what you do and appreciate what you have here.
Look after each other
xxxxx
well it seems ages since i was on and i wish i could say it was because i had been on a lovely cruise or painting the town red in the sales lol!!
Just when i thought ms was giving me a break in that no new symptoms had appeared and although still very tired and in pain I thought i was doing pretty well. Then i started having these"turns" no idea what to call them to be honest. One minute i would be standing then i would get hot, start shaking and fell dizzy kinda like i was going to faint, so i sat down on ground or wherever i happened to be. My heart was racing and kinda like missing beats. Anyway at first they thought blood sugar but nope not that. The "turns" are occuring much more frequently now so i had no choice but to to gp.
So i am now being investigated for a possible tumor on my adrenal glands, or thyroid, or hormone probs...who knows. I just think "what next"!! anyway still waiting on results.
went to pain clinic yesterday and dr was very nice and understanding. He said my "turns" could not be related to all the meds i was on which was good because i sometimes wonder am i doing more harm than good taking so much. he is wanting to switch me from gabapentin to lyrica, drop my citalopram and kapake and use tramadol and up dose of amitripyline to 100mg. he also was thinking about baclofen?? but said maybe hold off on that as my jerking and twitching is not so bad...yet!!lol Great i said nothing like being positive! He said he didnt want to fire all the guns at once!!
Anyway im still doing too much, etc etc so he wants me to do a self management plan before i see him next. Anyone do one of these ? today was the first i attempted one and it was good i guess as i rated my pain and tiredness after each task. Im in bed now with leaden limbs so know that i did overdo things. Then i need to go through my day and see out of all the tasks which ones i could have delegated, left or only did a bit of!! I guess it will take time to get hang of it.
He is also referring me to a pain psychologist as he thinks learning some techniques on how to cope when pain is bad could work!! Never heard of this either.
Anyway at least im moving forward in a strange way which is good, so just need to get my funny spells under control and im sorted lol
love and hugs
debbie
xx
Hi all,
My name is Helen (already in use so I'm signed in under my old childhood nickname lol) I'm 46 (yikes-how idi that happen?!!) and I have had symptoms strongly suggestive of MS for a few months. Waiting to see neuro in a few weeks and put the whole dx thing in motion. Strongly suspect PPMS so John's robust posts have been a godsend. Have been in a very dark lonely place- especially as am struggling to seem 'normal' at work and for my 2 teenagers (one under GCSE stress currently) but this forum has been fantastic for lightening my mood. What a fantastic pragmatic and supportive group you are!! Intend to be calling in often!
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