Just Daignosed

New diagnosis and before diagnosis
1

Hello,

I have just been diagnosed today after a year of tests and trying to get my GP to do something. It started with pins and needles in my hands and feet which I went to my GP about. I had several different blood tests which showed nothing. Finally after a lot of hassle, I was referred to a neurologist who has been fantastic - from reading some of the posts on here I realise how lucky I have been in that respect. I had some nerve conductivity tests which came back fine and a head MRI which showed some areas of white (are these lesions?). I was then sent for more tests - more nerve conductivity, blood tests and lumbar puncture which was OK although had made it out to be much worse than it was. Today I went to get my results - mild MS. I know I am lucky that it is so mild at the moment but I am worried about what the future will bring both for me, my career and my family. I am a teacher working at a boarding school which demands long days, a lot of extra involvement as well as outstanding results,. I have found that in addition to my physical symptoms, I am struggling with fatigue and memory recall and occasional visual problems which prevents me from driving.

I am just wondering if anyone can answer any opf my questions

  1. is anyone out there working in education and coping well with the demands of this profession

  2. are there any tips for coping with memory recall - I struggle when put on the spot by a student expecting me to recall a tiny fact about my subject (which I did used to know!)

  3. how do I go about finding out about an MS nurse? I have seen people talking about them on here. I realise I have mild symptoms compared to some and for that I am very thankful but I want a point of contact incase I have a relapse or need someone to talk to.

Is anyone out there like me? I am now awaiting an appointment with another consultant to talk about drug management. I know nothing about the drugs available so any info would be greatly received.

Many thanks, and wish me luck, I still need to tell my other half this evening.

Jenny

2

Hi Jenny

My neuro is waiting for me to relapse in order to dx MS for certain - for now I have a mild ms-like demyelinating disease.

What are your Vit D levels like - mine were ridiculously low and I am on Vit D3 (1600 iu per day), before I went on this I had the brain fog from hell - which is not good when youā€™re studying law! It might be worth asking your GP about this if you havenā€™t already. I still have bouts from time to time, usually when I havenā€™t been outside much (UK winter anyone?)

Your Neuroā€™s office should be able to sort out an MS nurse for you.

Good luck with your next Neuro appointment, theyā€™ll be able to discuss the correct drugs from your MS, and if you havenā€™t obtained an MS Nurse in the meantime, put it at the top of your list for when you see them.

3

Hi Jenny and just wanted to add my two pence worth (for what itā€™s worth!) This board is great,the forum is great, and itā€™s been a relief to have this contact with other MS-ers. I think that the dx of MS can make you feel very alone. People who havenā€™t got it donā€™t quite get how it feels having these annoying symptoms when you look ok.

From my experience - dx just over four weeks ago with RRMS, but this just confirmed what the neuro suspected when I pressed him in December - itā€™s been a sort of grieving experience, and Iā€™m still cycling back and forth through the stages. I see a lady for some therapy anyway, and it has been a huge help as I can go there and express my true feelings about the dx, which itā€™s difficult to do with family - although my husband and two adult kids (still at home!) have been great. My husband came to the appointments with me, which helped as sometimes when you hear something unpleasant you donā€™t quite take it in, and another pair of ears is good.

I canā€™t really advise you on memory recall. It must be hard enough when youā€™re teaching, even with an MS dx. When Iā€™ve had problems remembering something Iā€™ve always attributed it to a senior moment/being post-menopausal. Now I wonderā€¦Iā€™ve noticed though that as soon as you stop trying to think of the answer, it comes back to you. But thatā€™s no good if youā€™re teaching I suppose!

Strange thing: I go to a very small French conversation class - there are three of us plus my friend, who is a language teacher. We all speak it reasonably well. But quite often, a few weeks ago, I would feel like my brain was covered in glue, and the words wouldnā€™t come out in French. Particularly when reading a date out loud (we always do a novel in French) - saying a date in French is always a bit tricky for me, but I just couldnā€™t do it. Honestly thought I was going mad, but now I understandā€¦! We had a class this morning and it was soooo OK! Funny that I felt that way before.

Regarding Vitamin D - the first neuro I saw told me to immediately start on a high dose of Vit D as soon as he saw the results from my first MRI.

My MS Nurse _who I havenā€™t seen yet - comes via the neuro.

I hope it went OK, telling your other half. I think itā€™s a shock for them too, and a big one for you. Be kind to yourselves.

Hugs

Louise

4

hi jenny

it sounds like you have relapsing remitting ms.

the drugs available for this include the injectables and the new tablets.

do a bit of research so that when you see the new neuro you wonā€™t be bamboozled.

itā€™s all a bit of a postcode lottery. living in greater manchester iā€™m lucky enough to have 2 ms nurses and generally excellent cover.

you need to inform DVLA of your diagnosis or you will be breaking the law.

DVLA wonā€™t do anything other than put you on a 3 year licence.

it is your choice whether to inform your employer or not.

if you do, they will be bound under the DDA to make reasonable adjustments for your illness.

ā€œaccess to workā€ can help by providing transport if you can no longer drive.

other teachers with ms have a teaching assistant to help with the fatigue.

the memory issues are difficult but i look on it all as symptoms that come and go, get worse and get better.

you need to talk it all through with your hubby.

the most difficult thing at this stage is maintaining a calm frame of mind.

mindfulness meditation really helps with this.

courses are available in some areas or you can download it.

just 30 mins with it puts me in a good place.

good luck

carole x

5

Dear TheresaB, Louise and Carole,

Thank you so much for your replies, strangely enough the most supportive person has been my brother, we never used to get on that well. I have told my other half but wonā€™t see him until the weekend as we live about an hour apart for work. I will talk to him then and whilst heā€™s so good at being laid back, sometimes he can be too laid back!! I need him to understand that the future is unpredictable but also that I am going to need his support with trying to eat more healthily and doing a bit more exercise as and when.

I have started taking some Vitamin D tablets (which I had laying around) - thanks for the tip. I am kind of feeling like its not really happening whilst trying to take on all the information I have found on here (so useful!) and whilst trying to think about telling my school etc as there are some things I am worried about such as taking kids on DofE expeditions with remote access/no mobile signal. I have been feeling for some time the brain fog and not being able to get the words out - I thought I was just being stupid, so Iā€™m glad I know why that is happening and that Iā€™m not just becoming stupid. Its going to be tough when the kids put me on the spot though and often I have to explain complex topics quickly and cannot get the words out! Not sure how my boss is going to like that.

Carole, thank you so much for all that info - who knew you had to tell the DVLA - I will get on that tomorrow, you are the first person to tell me that! and thanks for the mindfulness tip - I have an app called Headspace which (like everything else) has kind of gone down the drain recently but I will get back on it.

I am lucky I found this out at the start of half term, not sure how I would have coped with a diagnosis and having to go back into school.

Virtual hugs to all of you for taking the time to reply to a rather lost and alone feeling chick, you donā€™t know how much it means!

Jenny

6

Hello

So sorry to hear about your diagnosis. White spots are indeed lesions or scarring.

7

Good advice from Teresa, Louise and Carole.

I am sorry about your diagnosis.

quote=secondrowchick]

  1. is anyone out there working in education and coping well with the demands of this profession

[/quote]

Iā€™m afraid that MS does tend to hit young adults who are establishing themselves in their careers, and it can wreak havocā€¦ Even when disability isnā€™t obvious, MS can make it very difficult to stay on course at work, perform at a consistently high level and fulfil oneā€™s career potential. It is very tough. Having said that, some people do really well - particularly in the early years. All I can suggest is, do what you can do and donā€™t assume trouble until it comes your way. Youā€™ll deal with whatever you have to deal with.

quote=secondrowchick]

  1. are there any tips for coping with memory recall - I struggle when put on the spot by a student expecting me to recall a tiny fact about my subject (which I did used to know!)

[/quote]

Grow a thick skin. Thereā€™s no disguising this sort of recall trouble, and there really isnā€™t much that you can do about it, particularly in front of an unforgiving audience! Coping strategies to help you deal calmly with that when it arises are probably the best you can do.

quote=secondrowchick]

  1. how do I go about finding out about an MS nurse? I have seen people talking about them on here. I realise I have mild symptoms compared to some and for that I am very thankful but I want a point of contact incase I have a relapse or need someone to talk to.

[/quote]

Your neurologist will refer you. Talk to the neurologistā€™s secretary to make sure that this referral is in the system. If your consultant is not an MS specialist, and hte one you have now been referred to is, then it might be the MS specialist consultant who works most closely with the MS nurse(s). Either way, ask your current one how all that works in your area.

quote=secondrowchick]

Is anyone out there like me? I am now awaiting an appointment with another consultant to talk about drug management. I know nothing about the drugs available so any info would be greatly received.

[/quote]

Thereā€™s good info in the main part of this MS Society site about the disease-modifying drugs available. The range is getting wider all the time, and the effectiveness is improving all the time too. Thereā€™s never a good time to get MS, but, if there was, this would be it!

I really feel for you - this early period after dx is no fun at all. Thereā€™s a lot of uncertainty ahead, of course. But most of us find that, once the initial shock has passed, we become more able to deal with that and make a good life regardless. Believe it or not, you will regain your calm; you will not keep feeling the way you do now. Donā€™t worry if you feel totally out of control and very emotional at the moment. That might take a while to pass, but pass it will. Hang on in there.

Good luck with it all.

Alison

1 Like
8

Hi. I was also diagnosed yesterday

They gave me to choose between Tecfidera, Rebif, Copexone or beta serum, and i have a window of 2 months to decide as i still need to do the lumbar puncture and spinal cord Rmi.

They diagnosed me with a brain RMI and optic neuritis and few sensorial problems linked to electric pain.

I am also in doubt and very scared.

I am a cabin crew and i feel destroyed knowing that at some point of my life i will need to give up. I love my job.

I am not the best source of information because i feel very lost, but if you need to speak i will be here.

Thanks a lot

9

Hi Diana89,

Thanks for your post, I am sorry to hear your news - hope you are feeling OK. I go through times of feeling positive and optimistic to being very worried and scared. Read some of the other peoples comments above as they have been so helpful! Just a tip for the lumbar puncture - I drank LOADS of water before hand to try and combat the ā€˜headacheā€™ that can occur afterwards and it seemed to do the trick!

Look after yourself and send me a message if you want to talk - it is nice to have people going through something similar and knowing you are not alone, no matter how alone you might feel. Iā€™ve not got to the drug stage yet, waiting for an appointment but want to do some research before I have that.

Take care,

Jenny

10

Thank you Jenny. I didnt get to the medication but as I need to think the doctor gave me the 4 names to search. Did the lumbar puncture hurt so much as many people says? Ok I will follow your adviseā€¦I will drink water. Thanks very much Diana

11

To be honest the worst part was the local! I also had a really sore back from pulling a muscle - it was more uncomfortable than painful and one it was numbed the only other feeling I had was the odd shooting feeling down my legs, I guess as he touched a nerve! It was nothing worse than the nerve conductivity tests if you have had those? I had worked myself into such a state. My advice - take someone with you to keep you talking and take your mind off it, and reward yourself with a trip to Costa or something afterwards. My back was sore the next day after the local had worn off.

Good luck!

Jenny

12

Morning all. Diana - Iā€™m just wondering why you were asked to ā€˜chooseā€™ between medications. My neuro only talked about Tecfidera really as it is the newest one, I believe. Have my first appointment with the MS Tecfidera nurse at the hospital on Monday week to arrange to go on it.

Re lumbar puncture - I had two ā€˜goesā€™ at it. The first time they couldnā€™t get the needle in as I have degenerative discs at the base of my spine (apparently itā€™s an age thing) - so the second time I had it done under Xray guidance, which they seemed to find a piece of cake. You are given so much local anaesthetic (I asked for lots!). I found the local anaesthetic injections no worse than having a filling. The whole thing was much less traumatic than I had imagined. The worse part was lying flat (with a pillow though) for three hours afterwards (it was boring) and having to use a bedpan as I was told not to get out of bed. Felt bit tired for a couple of days afterwards but that was all. I too had got myself worked up about it but there was no need. Oh, and I didnā€™t have the lumbar puncture headache which I had spooked myself about. The nurses just told me to drink plenty of water - they said there was no need to be drinking coffee or cola, which is supposed to help, The cup of tea and sandwich I had afterwards helped, though I donā€™t recommend trying to drink tea and eat while lying down!

I notified the DVLA and havenā€™t heard anything back and I donā€™t especially expect to either.

Regarding significant others/family members - I think that looking at this website with them helps. Information helps, and most people know very little about MS, I find (well, why should they?) and say things (to me) like ā€˜but you look wellā€™ (I do)/you are obviously managing well and have no visible symptoms (also true) or they look shocked and you can see that they are imagining the worst case scenario.

I find that my wonderful therapist has helped me (going for something else) as I can go there and really express my deepest feelings about the MS diagnosis which I donā€™t really want to do with family members. Also Iā€™ve been on antidepressants for years and that helps. Someone compared them to ā€˜sweeping the dirt under the carpetā€™ I think. Absolutely not true, For me they just help me to cope a bit better with things generally and I donā€™t think anyone should be afraid of taking them if they are offered, They are not cheating and donā€™t stop you feeling normal emotions.

Oh, my MS neuro also said to me that now is a good time to be diagnosed with MS, if thereā€™s ever going to be one - as there is lots of pharmacological treatment available now, and lots of research happening in the field.

Best wishes - Louise

13

I didnt have the nerve conductivity test but I know more or less how they work. How long it took to do the lumbar puncture? They gave you anestesy right? Sorry for so many questions. Thanks a lot Diana

14

Thanks a lot for your comment Louise. My doctor gave me some options as I asked which options I had as I am flying as a cabin crew . Anyway I think will be better tecfidera as far as it works and there are no risks. Im going to follow the advices. And if I can help with anything just let me know. Thank you Diana

15

Diana, since you are cabin crew you must be very calm - youā€™d need to in that job! Hopefully this will help you in your ā€˜journeyā€™.

The Tecfidera seems to be pretty popular from what I can see. Perhaps we could have a dedicated thread on this forum as it seems to pop up in various threadsā€¦

Had letter back from DVLA in the post this morning saying that they are writing to my neuro and expect to hear in six weeks (theyā€™ll be lucky!) and only contact them if thereā€™s a change in my condition which would affect my driving.

The journey (sorry, sounding ā€˜X Factorishā€™ again) seems to be very long - from symptoms through final diagnosis and then afterwardsā€¦This forum helped me realise that itā€™s perfectly normal to feel that way.

Louise

16

Thanks very much Louise. I am not very calm Im very nervous sometimes but I can control itā€¦and controlling sometimes is not goodā€¦but I love the job and im nervous but patientā€¦so I do my best :slight_smile: im just scared of losing the jobā€¦but well ill be strong :slight_smile: