Patience, you were truly named correctly.
I don’t think you necessarily have to assume that being older = progressive MS.
MS is a bugger, it will do whatever the hell it likes, no matter what age you are on diagnosis. Plenty of people diagnosed in their 20s have PPMS diagnosed so you are just as likely to have RR, unless you’ve had symptoms for years that have come and gone without investigation.
Which means that you could be prescribed a DMD. In fact, many neurologists habitually diagnose RRMS in the absence of evidence that you’re MS is definitively progressive. So your teenagers may find that Mum is OK for years to come. They aren’t necessarily going to have a badly disabled parent, so your duties as taxi driver, laundress, chief cook and bottlewasher may continue for years.
Many people do follow the OMS, Jellink protocol and find it helps them. Others use mindfulness meditation, or the Swank diet (or a combination or something completely different). Because we are all so different and our bodies react to food and drugs in very individual ways, it’s a case of finding something that works for you.
Best of luck to you both. Try not to be too stressed by the drawn out process of becoming diagnosed / having neurological tests.
And Daviesp, don’t automatically assume that it is MS, it is only MS when you’ve had all the tests and a neurologist diagnoses you. So, in the meantime, try to keep an open mind about what you are experiencing. Having a grandparent with MS only makes you very slightly more likely to have MS than another person in the general population without any history of MS in their family. I know it’s hard to be going through a long period of limbo, while you wait for the neurologist appointment, then go through testing (assuming s/he thinks tests are warranted). But all you can do is try to relax over it, try not to worry too much and feel free to come back on here for support.
Sue
Dear Sue, I am never certain that I am writing in the right place?
Thank you for your reply, especially the experienced stuff, I.e. I won’t necessarily have progressive. Five days of steroids are having an effect and I am looking at the worst - sad. I am learning to meditate. The real issue for me is that it is so lonely, trying to work it all out and filling ones thoughts all day with it. Waiting. The private neurologist diagnosed me but the NHS wants to diagnose again and in the meantime, time without drugs skips along. Warmest x
HI All
Im 61 and in midst of trying to get a diagnosis one way or the other.
I was accidentally referred to 2 Neurologists, one says on contrast MRI I have a cervical spinal lesion = Transverse Myelitis plus patches in the brain + my symptoms = LOMS. The other Neurologist completely denied I had MS, couldnt explain the spinal lesion or suggest anything else that might cause my symptoms. (waterworks, bowels, swallowing, balance, memory)
So I am trying to find a Neurologist who has experienc ein LOMS
In meantime I am taking high dose vitamin D3 (5,000 units and if you are going to take Vitamin D it must be D3) plus also Folate and B12, plus trying to take one day at a time.
Ozeroo
Hi to all of you. I haven’t been diagnosed (yet) but when you know you know! I first started with a pain in my ribs when I was about 18. Which came and went and never thought much about it. Then it disappeared for quite some years. Then it came back when I was about 27. But no other pain else where. I had been to the doctors over it but the put it down to musculoskeletal issue’s. On and off for some time. Mainly when I got stressed. But August of last year I started with a burning sensation in my right shin. That lasted for about 5 weeks and shoulder pain which was so painful. Am usually quite strong and receptive to pain. Then at work I had problems with my vision I went partially blind in my left eye. Which scared the (removed by moderator) out of me. But over the last 7mths my symptoms I’ve got worse and spread to other areas. I started with a shooting pain in my buttock on my left side and also the stabbing pain came back in my shoulder. Like a tight band around the top of my left thigh like somebody was squeezing it. And now my eye on left side is so blurry I can see properly out of it. I’ve also started with pins and needles in my fingers and toes on both sides. I have been to doctors on Thursday and I’m having an MRI scan on Tuesday. I am so frightened that I’ve had this condition for at least 27to28 years I am now 49 my husband is beside himself I really don’t know what to do I’m so worried that I’m far from treament because of my age and what ive read about rrms ppms spms sorry for the rant I just needs to get it off my chest and tell my story Angela xx
Hi Angela, dont know if you have realised, but you have tagged your post on to an old thread.
If you start a new post you may get more replies.
Im glad you are having the MRI. Hopefully it will give you some answers, as to whats going on.
Your symptoms over the years, could be MS…but they could be a number of other things too, which mimic MS.
I`ve had PPMS for 22 years and only got diagnosed last December.
If you do have MS, then please try to accept it into your life. Life can still be very good as long as you have good support, pace your activities and get good rest.
Boudsx
Hi Geoff I wondered how you were doing now? also if there are good resources ref LOMS, even if only case studies (e.g. to get an idea of best tactics, likely prognosis)? Many thanks and all best wishes