hi everyone
just come for a quick chat,recently diagnosed with ms (confirmed today)
symptoms started july 2018, slight numbness under left foot toes
gp said sciatica 2 weeks later numbness moved up the leg
gp still said it was sciatica sent me to a osteopath for treatment
month later was badly limping gp then thought disc problem
sent for mri came back clear
at that time both legs was affected, using zimmer frame to walk
sent 2 referals neurology and neurosurgery to me to get first appt that was offered
neurosurgery sent me for head,cervical,and thoracic mri (nov 2018) this time i was in a wheelchair
brain scan clear ;lesions found on spine
recieved an appt for neurology for feb, sent me straight to hospital
where they found that i had transverse myelitis
steriods iv 5 days, then plasm exchange
discharged yesterday
jut in shock and confused
cheers paddy
ps sorry about grammar, but fingers are like sausages
Hello Paddy
Welcome to the forum. I know membership of such a forum probably wasn’t in your wish list, but you may just find we’re to become new friends.
You’ve had a hell of a journey to get where you are now. And very quickly too, 7 months from first symptom to diagnosis is fast.
Don’t worry about grammar or spelling, some of us are lucky to have devices that correct our spelling, but sausage fingers affect many MSers.
Did the steroids / plasma exchange help? How are you doing now? Walking or still in a ‘chair? Using a frame or walker?
Have the neurologists decided which variant of MS you have?
It sounds like your MS has been very aggressive from the off. If you have had any improvement from the IV steroids, then I’d imagine you’d be diagnosed with relapsing remitting MS. This would mean you get access to disease modifying drugs (DMDs) and probably quite heavy duty drugs at that.
But if you’ve only had minimal improvement, you might have been diagnosed with a progressive variant. Which would would mean, sadly that there are no DMDs.
Regardless of the variety of MS, you should be offered some physiotherapy which could be invaluable to strengthen the muscles as much as possible.
Best of luck.
Sue
him sue
thanks for the reply
the neurologist said the results came back negative,
so they think its not progressive which is good
but they also said that because from the onset symptom to the start of treatment was 9 months
that some if not all of the damage to my legs and arms, is probably irreversible
i dont really feel any difference from the plasma exchange,
but it can still kick in up to 2 weeks after th last day of treatment (which was tues)
hopefully it will
cheers
paddy
Steroids keep working for a good while too. So think positive Paddy, your legs will be OK. Just don’t push them too hard or expect too much of them at first.
Sue
hi sue
thanks for the positive message
if means a lot to me at the moment
i just feel a bit ovewhelmed
with thought of the illness, sorting out pip etc
cheers
paddy
Hi My name is Lara and I am 38 years old and I got diagnosed a few weeks back. It came as a shock and a relief as fineally have a diagnosis! I hadn’t first lesion was found following a seizure I had and I went off my feet during this time too and went from walking one day to not being able to put one foot in front of the other! As I only had one lesion at the time no one thought anything of it and concentrated on the seizures! Then things over the years different things developed more so when I had my son 7 years ago and then things really started to change a year after having him! Slowly things were just getting worse and worse! Lost vision twice ln right eye, steroid treatment required! More seizures, numbness in legs mainly but hands too extreme extreme fatigue but I also have another condition called adrenal insufficiency or secondary addisons so it very similar symptoms anyway had more scans more lesions have appeared and now have some on spine too! So waiting to go back to see the nurses to make a plan on what next and treatment! What kind of treatments is everyone else on and what your experiences of the doctors and hospitals???
Appreciate any information
thank you
Hello Lara
Welcome to the forum. I’m sorry you’ve been diagnosed so needed to find your way here. But just possibly it’ll be a good thing to have been diagnosed finally as you may be able to start a disease modifying drug (DMD) and thereby stop any more relapses.
With regard to DMDs, if you’ve been diagnosed with the relapsing remitting form of MS (which I would assume since your symptoms have been coming and going over years), you will be able to take a DMD.
Have a look at MS Decisions aid | MS Trust This lists all of the drugs currently available. Your neurologist will give you a short list of a few drugs, depending on how ‘active’ your MS is.
Best of luck
Sue
Thank you Sue for the information! It hard as it a long wait now to know what kind of treatments are on offer! But as you said it been going on and off for years so relapses are up and down! Anyway this site is very useful and good to talk to people in similar circumstances! Happy to share my experiences with anyone! Thank you again Lara x
Hi, my name is Terri and I’m 53 yrs old and just diagnosed with PPMS about 3 weeks ago. My diagnosis came pretty quick, in only 2 months from beginning of testing. Which I hear is quite fast. I believe some of my symptoms started 10 to possibly 20 yrs ago. I’m still very mobile even though at times quite challenging. Has anyone heard of or used Ocrevus. Was recently approved by FDA in the USA. Don’t know if anyone out there has used it and what their results were.
Hello Terri
Welcome to the forum. I’m sorry to hear your diagnosis has made you become a member.
Your diagnosis was very fast, especially for PPMS. Usually neurologists like to wait and see before declaring your MS is progressive. But as you’ve said you experienced symptoms from up to 20 years ago, together with your clinical evidence, it must have been sufficient.
Ocrevus has a U.K. license for both Relapsing Remitting and Primary Progressive MS. But NICE has ruled that although it is cost effective (ie the benefits outweigh the cost) for RRMS, it is not considered cost effective for PPMS. Essentially the results in trials for participants with PPMS were not as good as those participants with RRMS.
This has been a major setback on the road to getting a disease modifying drug for PPMS.
Sue
Thanks Sue, do you know where I could find any data on Ocrevus? Your help would be greatly appreciated.Thank you!! Terri
Thank you so much will read up asap. Have a good day! Terri