Hi there i know theres alot of posts about newly diagnosed ms and just wondered if anyone could shed some light on my situation as im very anxious. I recently had a nasty spout of what i thought was covid i spent aproximatley 4 weeks at home barely able to breathe coughing temperature rapid heart rate the works! Two weeks ago i woke up with pins and needles in my feet and which has since gone up my ribs into my chest belly and fingers! My toes and feet now feel fine only slight tingling but hands are worse. I have had a lumbar puncture blood test and mri and today was told i have ms. The doctor said its mild and is managble and that its more managable than migraines. Hes said i have no clear lesions and my brain is just inflamed and i will be fine for six months after i have had the 3 day course of iv steroids for 6-12 months. But he didnt tell me what to do after ! No info om managing it no info on further treatment no info on weather i can still work or what will cause a flare up no info on if the sysmptons im currently having will subside really upset and scared so any info or advice would be greatly apreciated !
Hi D4nflick3r,
I am sorry to hear you are feeling as you are. I too am newly diagnosed (admitted to hospital early April) and MRI, lumbar puncture and exploratory brain surgery confirmed MS (but still waiting for complete diagnosis from neurologist as covid has slowed after care) I too am feeling upset and scared so you are not alone. My symptoms got worse and new ones. I eventually got my MS nurse to get an apt with neurologist next wed. My 2nd half of 1st infusion is next Thursday but that’s long term. I need relief NOW ! It seems to be the same with new diagnosis, ie neuro need to see symptoms calm down before giving short term help. I’m still trying to figure that out but assume it’s down to the new diagnosis. It’s a scary world meantime and I haven’t left the safely of my bed in 4 days. I know that’s not good but it’s all I can do at the moment. Suffice to say you’re not alone.
Hello
You both have my sincere condolence on your recent diagnoses. It’s a very tough time to be diagnosed as there are shortages in all areas of the NHS, so there’s less information being given as a matter of course.
However (this is more relevant to the original poster), you should be given the contact details of an MS nurse who will help you with information and relevant professional referrals. If you haven’t, contact your neurologists secretary and ask for the details of your MS nurse.
For information about MS, try to avoid random googling. We often say Dr Google is a rubbish neurologist and should be struck off! You can find information on this site (see the tab marked ‘About MS’) and on the MS Trust Website (https://www.mstrust.org.uk/about-ms )
I can’t quite understand how your neurologist can be certain you have MS if there are no lesions in either your brain or spine. The diagnosis of MS is very circumscribed - see https://www.mstrust.org.uk/a-z/mcdonald-criteria But as he has made the diagnosis, to say it’s ‘mild’ is normally only a definite description applied in retrospect. This isn’t said to scare you, but to encourage you to find a little more about how and why he made the diagnosis and how and why he says it’s mild and that you’ll have no problems for 6 months.
The general rule when you are diagnosed with MS is to start taking a disease modifying drug (DMD) fairly soon after diagnosis. This is to reduce the number and severity of any future relapses. You should ask your MS nurse what s/he thinks about this when you meet him/her (or talk on the phone as this may well be what happens in the short term).
What you should both be aware of is that in most cases, the diagnosis of MS is of the Relapsing Remitting type. This means that your initial relapse should gradually remit (ie get better), either completely or partially. Further relapses could happen months or years into the future (this is the point of taking a DMD, to reduce relapses). But actually predicting the course of an individual persons MS disease course is impossible.
Best of luck to you both. This forum can be a brilliant resource, the members, either newly diagnosed like you, or old hands like me, will try to help with your questions.
Sue
Thank you Sue,I’m navigating this site bit by bit, it’s keeping me sane 