I have seen my doctor this morning about my depression medication. He told me he has a letter from my recent neurologist, dated 8 October this year, which I have also been sent. This letter says I have MS, almost certainly Primary Progressive, but MRI with contrast, which I have now had, will confirm.
The doctor said he also had a letter, which I haven't seen, dated 9 October this year, from my first Neurologist, that says Spinal Fluid results show I don't have MS. The only time I have had Lumbar Puncture was five years ago. I have tried to contact my MS nurse, but can't get her yet.
This raises loads of questions.
1) Why wasn't I told about this?
2) If I don't have MS, what do I have?
3) Why aren't I being treated for 'not MS'?
4) Will my friends and family think I am making up symptoms?
Hope you're all ok.
I have a problem and Im now sure why but i think its got something to do with the tolteradol Im on for my bladder. I was feeling the need too often and they gave me this.
I've. been on it a couple of months now and the horrid feeling doesn't bother me much now and i sleep well.
The problem is, i am now feeling like Im leaking urine and i have a vaginal discharge that is contributing to this feeling so be honest i dont know if Im leaking or its heavy discharge but i feel very very disgusting.
Do you think it IS the medication because Im wondering if the dose could be reduced and still be effective?
Dont know if this constant feeling of leaking is worse than constantly needing to pee.
Im also frightened that Im about to lose control of my bladder altogether.
I've now just had to call nhs direct cos of palpitations. I've had them for three nights now, they start about 7pm and continue until i go to sleep. I think these are linked to the tablets too.
Thanks for reading.
I returned from the Walton Centre in Liverpool last week and my consultant tells me that I am being put forward to take part in the trial for Fingolimod.
I knew nothing of this drug but was very happy to be told its the first oral treatment designed for MS!!
Thats all I know right now, I should hear some news at the end of July and then there will be a series of tests on my heart, blood and lungs as side affects hit those areas. If all goes well I should be on it for 2 years.
I dont know what to say other than any trial of any drug, I had made the decision to give an instant YES because we wont find a cure unless we all pitch in. So wish me luck and see my fear once it gets closer!!!
HI all im feeling really scared :0( Today has been not a good day at all think i might of over done it yesterday both arms are so weak can not grip much and in both arms i normaly only have trouble with my left hand i have had shooting pains in my arms etc but what has scared me is for about 25 minutes earlier i devoloped a bad bad stutter my words where not coming out as they should i was getting all mixed up and had to really concentrate on what i was saying to make it come out right i have had problems word finding before but not like this and it has really scared me whats happening ????
Thanks Tracy :0(
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