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newly diagnosed ms

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 https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid 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

Hi

I’ve just made a small correction to my earlier post. Ocrevus is deemed to be cost effective fo RRMS only, not PPMS.

The MSS page on Ocrevus is here: Ocrelizumab | Multiple Sclerosis Society UK

The MS Trust take on it here: https://www.mstrust.org.uk/news/news-about-ms/nice-does-not-recommend-ocrelizumab-primary-progressive-ms-england-and-wales

And the NICE (I so wish their initials didn’t spell that) decision about Ocrevus and PPMS is here: https://www.nice.org.uk/guidance/gid-ta10153/documents/final-appraisal-determination-document

Sue

Thank you so much will read up asap. Have a good day! Terri