I was diagnosed with MS on friday gone and it all started by numbness on my legs and left index finger and thumb tips. Then MRI showed up the plaque. I am 29 years old and know nothing really about MS except for what I have now read in the pack they gave me. I have an appointment on Wednesday with the neuro care nurse to see what meds I will use. I am so confussed and completely knocked back by the shock of this diagnosess. I have a few questions if anyone can help?
Do we have to inject meds or is there tablet form?
It is a shock to find out that you have ms and you will probably go through a grieving process, feeling angry, why me, and a lot of frustration. This is all quite normal and to be expected, but remember you have ms it hasn’t got you. You are still the same person before you knew and there is life with ms. There are pills one can take, DMD’s and many different drugs and hopefully your ms nurse will be able to inform you which type of ms you have. Do what you feel you can do and don’t do what you feel you can’t, most of all listen to what your body says to you, if you need to rest then rest. Wishing you all the best.
I am at the moment still in shock. It keeps going through my head “why me” the family are upset, as expected but I supose not understanding MS is the scary part. Since I’ve just been told I keep thinking every single tingle or pain is MS related. Is it normal to feel this way?
There isn’t a normal way to feel,and you may think its sorted in your head and then you fall apart again.
It is a huge shock and because of the variable nature of the condition it takes time to get your head round it, and because many of the symptoms are invisisble non MSers don’t understand. Rest assured we do for those occasions when a rant is in order.
Have they said you are eligible for disease modifying drugs/treatments,or are they talking meds to help relieve current symptoms?
If they are talking DMD then spend some time on the msdecisions site. This will talk you through what is currently available and a tool at the end allows you to work through deciding which one would suit your mindset,and lifestyle the best.
Never in a month of Sundays would I of thought I would choose to inject daily,but it was my preferred option from the side effects point of view.
You must inform DVLA you can download the form from their website,and can still drive while they take months writing to your gp. Usual practice is they give you a restricted 3 year licence,and they check again with the gp to see if you have deteriorated.
You must tell your insurance that you have reported an illness to DVLA.T hey acn not increase your premiums .
Check any insurance policies for critical health as Ms is something they pay out on.
The nerve conduction tests see how long it takes for signals to get through.Typically for us they are slower as the wiring has been chewed and repaired with tape for want of a better explaination.
Some of those questions are tricky to answer without writing an essay, but I’ll do what I can.
1: DMDs (disease modifying drugs) come in pills, injections and infusions. If you have a look on the msdecisions website, you can read all about them. The DMDs that are normally prescribed for new people are injections. If these don’t work, then people are switched to the pills or infusions which are stronger drugs (and therefore have stronger potential side effects). Please don’t worry about injecting - easy to say of course, and I can’t imagine that there are many people who don’t freak out at least a bit before they do it - it is honestly MUCH easier than you could ever imagine and there are some excellent autoinjector gadgets these days that can mean that you don’t even see the needle.
2: MS doesn’t really have levels. There are different types, but all of these can vary from very mild to very severe. Given that your neuro is putting you onto a DMD, it is almost certain that you have RRMS (relapsing remitting MS). This is the type of MS that can respond to DMDs. The injectable DMDs don’t help the progressive type of MS.
3: Are you asking about nerve conduction tests? If yes, then different conditions give different results. In MS, nerves can be slower to respond because their myelin coating has been damaged by the immune system. (Myelin helps nerve signals to travel fast. “Demyelination”, damaging / removing myelin, is a key process in MS.) This sometimes shows up in nerve conduction tests.
4: There are no dos and don’ts with MS. There are things that are recommended though: taking a hefty vitamin D3 supplement (a lot of us take 5,000iu a day - Healthy Origins are cheap on amazon if you want to get some), keeping fit, stretching, eating a healthy diet, not smoking (smoking is known to be bad for MS), avoid overheating (makes symptoms worse temporarily) and, if you suffer from fatigue, resting before you get tired and pacing yourself. I’ve probably forgotten something(s), but it’s all common sense really: keep as healthy as you can and don’t overdo it + take vit D3.
If you want to learn more about MS, I recommend sticking to the publications that you can download from this website and the MS Trust website: there are a lot of crackpots out there and it’s easy to get taken in if you are still learning! There are no miracle cures for MS and anyone asking for money for something that will help MS is probably scamming When you’re reading, please remember that MS is massively variable, but that these booklets have to cover every possibility. That means that no one gets everything that’s mentioned in the booklets!
Everything is quite overwhelming in the beginning, but I promise that it does get easier. Getting the diagnosis is a horrible scare and a complete shock, but MS really isn’t the end of the world. People with MS can still live long, happy and fulfilled lives. And life really can still be good.
I really appreciate your feed back. Since I have registered on this forum my fear had lessoned because of the support from people.
Totaly surprised about the DVLA Rizzo, good to know but for now I will see whats happening tomorrow at the Hospital.
Karen you really answered my questions well and I feel so much better (even with the needle fear). I will investigate futher where you both advised me and see what happens.
I have been thinking a lot about it since being told and I am starting to realise I have probably had MS 6 years. Back in around 2006 my mother was dignosed with Alzheimer’s at the age of 52. It was a really hard time because I don’t live in Ireland anymore and my sisters could not organise a piss up in a brewery. So I was having to go home and sort everything out. It was really stressfull. Not long after that I got really bad pains in the backs of my eyes, I went to the optition and he refered me to the hospital saying “I might have a rare condition that eats away at the back of you eye”. After the hospital did all the nessessery tests they found nothing and sent me on my way. A year after that 2007, I got pins and needle in my belly. I went to GP who stuck pins in my belly and said “can you feel that” which I could, and she said "Ah it’s just a trapped nerve it will go away.
Now this year 7 months ago is when I started getting the numbness and pens and needles (as explained above) and I was very stressed out with my job as my boss was a B…
By the sounds of it, stress is the problem that gives me relapses.
I am sorry that you have had this bad news. It is a terrible shock when it happens, even if is not altogether unexpected, and it takes a lot of getting used to. All I can say is, please go easy on yourself and don’t expect yourself to take it all on board quickly, or even at a steady pace. Most of us have our ups and downs emotionally when trying to get our heads around an MS dx. And don’t be too bothered by your family’s reactions. The people who love us are not always terribly helpful on these occasions; they have their own shock and fears to deal with; they are different from yours. Even with the best will in the world, it can be difficult for loved ones to know what to say for the best. (What am I talking about? … There isn’t anything to say for the best! Although hugs are usually good.)
You’ve had lots of good information and thoughts in response to your questions, so I won’t go over again.
Your observations in the later post are very interesting - have you had the conversation about symptoms years ago with the neurologist? If not, that is certainly an agenda item for your next discussion. You might get some eye-rolling from the neurologist re the GP’s efforts at a neuro exam - neuros sometimes don’t think much of GPs’ efforts in this regard!
As for stress, well, many people with MS, me included, feel that either sudden or chronic high levels of stress do not mix well with MS. I’m not sure that anyone really understands how this works. But my subjective experience is that there is a real effect. Does it actually bring MS on in a person who might otherwise have dodged that bullet? I have no idea. My guess is that, as with most bad events in life, a combination of of things have to go wrong (maybe genetic susceptibility, virus exposure, other environmental factors such as stress or whatever) and they need to go wrong at once in a sod’s law sort of way in order to trigger the MS switch to the ‘on’ position. But I don’t know. One thing’s for sure - it’s complicated.
I never had a conversation with an neurologist about my symptoms from years ago yet. To be honest (and a bit thick) I never knew what a Neurologist was till friday gone when I was told I had to see one. I will be seeing one tomorrow and I will explain everything. Hopefully then she will be able to tell me which MS I have.
Hi, I have been also diagnosed with ms a few weeks ago my gp told me it was a possibility from the start so feel I have been through the greiveing prosess and now I’m at the denial phase thinking they jumped the gun, the diferent stages they say oin this site is so true.
I’m also 29 and symptoms only started year after year from hell in work as my boss was also a b***** and ive been really stressed I still have problems trying to keep strees levels down as I am a stress head my boss was fired so thats a plus.
My symptoms are pretty much the same numbness in legs and arms and started from a tingle in my index finger and have had the numbness pins and needles across my stomach and facial numbness was the start of it, Ive had to types of eye pain one where it feels like its pushing out only had this with one of my eyes and a stabbing pain which ive had in both at times havent had any pain in eyes for about 1 month now thank god as I hate itstill numbness on my right side at mo and fatigue is hitting me badly think I’ve been over doing getting ready for crimbo and all.
My boss has left to another building for a promotion (thank god) but my mother is going through a bad patch as her meds have been changed and she is acting very oddly. So I keep thinking about it and my legs start tingling (not sure if this is paranoia from the diagnosis) . Once I get to this appointment in the morning at 9:45am, I hope to feel better with lots of knowledge from the nurse. The main one now is fatigue but I thought it was normal for me to feel this tierd. I have just been told about the MS bringing that symptom. Funny, I am starting to laugh about it because there is no cure, so best just get on with it. I deffo think babies are on the cards next year before I get to old and can’t play with them.
Sorry for your dx Hazel. It is a shock and takes a lot of time to get your head round it. You do have a great attitude though - it’s true we can’t change or cure it and the best thing to do is to get on with your life. Loads of people on here have had babies with an MS dx, so it shows you that people can cope with it. Good luck with your appointment tomorrow. I hope it helps you by arming you with lots of helpful info. Thinking of you, Teresa xx
Hope all went well today, it was only 20 years ago that they was able to start treating MS its only a matter of time before they find a cure I’m quite hopeful.
I’ve already got to children a boy and girl they cheer me up and keep me going its a joy to have children especially this time of year.
Hope all went well today, it was only 20 years ago that they was able to start treating MS its only a matter of time before they find a cure I’m quite hopeful.
I’ve already got to children a boy and girl they cheer me up and keep me going its a joy to have children especially this time of year.
Hi Hazel Welcome from another newly diagnosed. I would add my tuppence worth about DVLA. By law, you must inform them once diagnosed. You must also tell your insurance company immediately. Technically you are driving without insurance and if you are involved in an accident, regardless of whose fault it is, the ramifications for you are not worth it. It’s two quick telephone calls that will cover your back.
When you’re reading, please remember that MS is massively variable, but that these booklets have to cover every possibility. That means that no one gets everything that’s mentioned in the booklets!