Well had my symptons for 9 weeks now , have improved a lot. But still have pins , needle in arm, feet and torso had brain mri which found some lesions and previous damage. Had full spinal MRI last week Off to neuro for results next week and DX ’ have convinced myself its ms as neuro all ready mentioned it. But after endless research ( Too much time on my hands ) convinced I have the worst sort. Male in my 40’s highest risk apperantly. Really can’t cope today and I know worrying is not going to change anything . But still doing in
Oh I’m sorry you are feeling so bad. It’s horrible waiting and wondering isn’t it? Is this your first lot of symptoms? Is it possible that you have had other relapses that haven’t been recognised as MS? I have had a dx of relapsing remitting after a very quick process of visit to GP, neuro and MRIs because a couple of other incidents previously were probably MS relapses that were diagnosed as muscle tension caused by stress and shingles! From what I’ve read on here Primary Progressive doesn’t always mean a worse outlook than RRMS either. Try to stay positive - I know that’s easier said than done - and keep talking to us x
Re-read your first sentence where you say that you have improved a lot. Hang on to that thought. I am absolutely no expert, but improving a lot is not (as far as I know) typically a feature of the kind of horror-story MS you have been reading about.
If you can, save your research until you know what you are dealing with. Sufficient unto the day, and all that.
Try to pace yourself emotionally. It is wasted energy, all this reading the horror stories. It won’t ward off the evil spirits, and it is exhausting. A person can fall under a bus doing that, because he was not paying attention to the real world.
Alison
Hi Gray, Like you my MRI showed previous lesions (at 26 yrs old) I’m now 43 and can remember the stress I went through during those pre diagnosis days. Having done neurology at Uni and knowing what the options were I scared myself stupid. In the end ms was the least awful of my self diagnosis! When I get too stuck into Google as I did last summer before surgery I try to remember a little mantra… Constant analysis causes paralysis Worrying about it will not change the outcome. Do something to take your mind off it over the weekend and up to the appointment next week. Let us know how you get on, we’re all here if you need us. Sara
If you have improved in just nine weeks, it’s unlikely you have “the worst kind” - by which I assume you mean Primary Progressive.
There is not really any “worst kind” of MS, as you can have slowly evolving primary progressive, but conversely, rapidly evolving RRMS. So some people with aggressive RRMS might actually be “worse” in shorter time than those with PPMS. I’m not trying to frighten you with this. Just to point out that it’s as individual as the person. No type of MS is an automatic predictor of how bad (or not!) it’s going to be.
But anyway, the key difference is that in general, with progressive types, you do NOT get better. That’s not to say you necessarily get worse really quickly, you just do not have the characteristic “attacks” (relapses) followed by improvement, that you see with RRMS. So relatively rapid improvement (attacks can go on a lot longer than nine weeks) is strongly suggestive that you do not have a progressive type, but the far more common (about 85% at diagnosis) RRMS.
Age or gender is NOT a reliable predictor. The pattern of the disease so far (whether you saw any improvement) IS.
Do be aware that not everyone who goes expecting a diagnosis always gets one. Despite the evidence so far, there may still be some bridges to cross, or somethng that does not quite fit the picture. I must say that I went along “knowing” I’d get a diagnosis, and in my case, I was right. But they do have very demanding diagnostic criteria, so if just one thing doesn’t fit the bill, or seems more consistent with something else, they may be reluctant to diagnose.
So try to stay open-minded about what you might hear. Yes, it might be the diagnosis you both dread and are waiting for. But it might also be that there’s not sufficent evidence YET, or that something has shown up that casts doubt.
Don’t start writing yourself off just yet. I was diagnosed over two-and-a-half years ago, at 44. Despite reading all the horror stories you no doubt have, about how, at my age, it was likely to be worse, and even being told by a doctor (not MY doctor, but one I knew socially) that it was more likely to be PPMS, it wasn’t, and not a lot has changed in 2.5 years.
I’m more conscious now, of not feeling well, but wonder if that’s at least partly psychological - not being able to pass it off as advancing age any more. I do have less strength and stamina, and more aches and pains. But you still wouldn’t guess anything, to meet me. You might wonder why I don’t like standing for very long, and am always looking for a chair! But you wouldn’t rate me as “critically ill” - which my insurers agreed I am.
Tina
x
Thanks folks I know it makes sense Had a good night last night . But bad day today legs are so painfull Well Tuesday will soon be here
The build up to d/x is the worst time I remember. All sorts go through your mind. Like you say, too much time to read up on everything to do with MS and you may find that some of the things you are reading will not correspond with your d/x.
My advice is to wait and see what the actual diagnosis is and don’t worry until you are told to worry.
Remember, we all know how you feel and are always here for you.
Hope you get on ok next week.
Take care.
Shazzie x
Hi Gray, Just wanted to reiterate what Tina said. When MS is mentioned and people discover the different types you can get, they automatically assume that PPMS is the ‘worst’ kind. However, MS is different for every sufferer, so some people with RRMS can be much worse off than someone with PPMS. How badly you suffer is not dependent upon which type you have but upon how bad your own MS is. People with both types can go for years with hardly any symptoms at all. MS is MS and you are not better off with one type or another. Try not to worry too much - I know that’s easier said than done! Live your life in the same way you would have done. You may even have something that can be easily fixed like a vitamin deficiency or something! Good luck, Teresa xx
Thanks just worrying all the time Pray it was something fixable but Brain MRI shows previous lesions and neuro mentioned ms then Thanks for the support
Hello Gray
I know exactly how you feel. I searched the internet wanting to know what was causing my symptoms - I actually thought I was having a stroke as the right side of my face had dropped, twitching in my lips and cheeks and slurred speech. After being referred to a neuro by my GP I was initially diagnosed last June (god a year ago already!!) by him who said he would refer me to a MS specialist. So after being told I had MS (not specified what type though) by the neuro I met with the specialist who wouldn’t confirm what I was suffering from. This was so frustrating as I had started to let my family and close friends know what the neuro had told me!!!
After numerous tests (including that horrid lumbar puncture) the MS specialist confirmed RRMS last December (5 days before Christmas - lovely Christmas pressie I can tell you). Last July I had IV steroid injections for 3 days in hospital to try and sort out the symptoms I was suffering (double vision, vertigo, slurred speech, aching joints, fatigue) and was off work for 6 months in total, finally going back to work last December.
Sara - what a fantastic mantra you have - I hope you don’t mind but I’ve borrowed that to be my new mantra!!
Tina - you are so right - “there is no worst kind of MS”. Unfortunately I had a member of my family telling me “well at least you’ve not got it really bad”. I replied with what Teresa said - MS is MS!! And yes, check your critical illness cover if you have any - mine paid out with “Suspected MS” that my GP had written on her report without any further queries!!!
BUT - since the beginning of this year I have decided that for as long as I can I won’t let MS beat me. I’m now on Rebif using the Rebismart and things are going well. I just pay more attention to how I’m feeling, not to push myself too much and to rest, rest and more rest. As my MS Nurse tells me - always listen to your body - it doesn’t lie to you!!
It is such a huge shock when you get the confirmed dx, but somehow you cope. That doesn’t mean you don’t have days where you say to yourself “why me?”, but that’s a normal reaction. Let us know how you get on and remember - we’ve all been there!!
Take care
Pen xx
Hi Gray
I hope you don’t mind me copying my previous answer to you in the ‘New Diagnosis and Awaiting Diagnosis’ board but it seems just as relevant now:
Like you, I was in my 40s with no history of previous symptoms when I had my first attack. I had three relapses in the first year (and possibly one other one which I didn’t have recorded as it was all a bit confusing and I wasn’t sure what was/wasn’t a relapse at the time). I thought things would never improve and was scared and angry. Four years later I am still working 30 hours per week at the day job and have an ad hoc typing job in the evenings. I have an active social life, I still go to parties, still dance [when my legs let me ;-)] and still enjoy life every day. My MS is definitely relapsing remitting but it did take a long time for the remission to reveal itself. The recovery was so gradual it took me a while to realise that it was happening. Have you thought about keeping a diary so that you can look back in a few weeks’ time to see if there is any slight improvement? It might just give you a much-needed boost?
Please,please, please don’t write yourself off yet. It’s still early days and once you have a firm diagnosis and the right medication there is every chance that things will stabilise. In the meantime, take each day as it comes, be kind to yourself and take enjoyment in the little things in life. I know this is easier said than done because I’ve been there. What really helped me was talking to people who had been through the same thing and come out the other side. That was the turning point in my mental attitude.
Of course, you are still dealing with grief too. Have you thought about seeing a counsellor? Sometimes, we need someone neutral to talk things over with and let all these feelings out without worrying about upsetting our nearest and dearest. This forum is good but we can only help so much …
Tracey x
You have said that you have noticed some improvement so this would suggest that IF you have MS then it is more likely to be RRMS. Generally even in remission we are still lift with some lingering symptoms and there is medication than can help with these. It might be an idea to discuss this with your neuro so he can prescribe something to help with the things that are causing you the most problems. Good luck for Wednesday. I hope that you get a diagnosis on Wednesday and can then stop worrying so much. It is easier once you know what you are dealing with.
Gray, big sympathy as I’m going through the same right now… I go back to Neuro in about ten days and I’m scared in so many ways. Probably because the biggest improvement for me is the relief in knowing there’s something wrong and it’s not just in my head. Because I’m still struggling after steroids I’m fearful though.
I won’t even start rambling on about the worries that have arrived now as I could be here for some time!
Get this, my appointment is on my 43rd Birthday and I have an appointment with the gastroenterologist 30 mins after - I’m feeling just a tad apprehensive about what the NHS have in store for me!!!
Sonia x