Newly diagnosed and trying to understand

New diagnosis and before diagnosis
1

Hi everyone and thank you for taking the time to read my post. I am looking for advice and understanding as to how ms shows itself as I am new to this and trying to understand things and make sense of them.

I was diagnosed with relapsing remitting ms 3 weeks ago which came out the blue but after talking through things, I have had 2 relapses with which I experience symptoms but not to the extent of the relapse.

My first was severe dizziness, slight face droop and balance which lasted about 3 weeks. Since this I have experienced on and off, cloudy dizzy head with my eyes feeling like they are crossing. It has been explained that although the relapse eased, the damage will have caused these intermittent episodes to carry on.

My second was what I thought was a trapped nerve in my leg, causing constant pins and needles, tightness like that experienced before you get a cramp and loss of touch sensation which eased after about a month. This is where my confusion is now starting and where I am seeking to understand better? Since this relapse if I walk fast or a little distance I get pins and needles in the leg which eases after I rest. Until today. The pins and needles started up but for the last few hours now I have had what I can only describe as a buzzing sensation thatā€™s quite uncomfortable and tight. I know these intermittent symptoms are part of the damage caused after relapse but my question is, will this progress in the symptom side of things or will it ease? Is there anything I can do to ease this sensation?

I am due to get a lumbar puncture and spine MRI in the next month. My neurologist wrote down several medications for me to look at for the DMDā€™s which I will go on at the next appointment.

I am sorry this is quite long but really find some aspects hard to figure out or what to expect. I really appreciate any advice, own stories given?

Thank you

Lynette

2

Hi Lynette

Oh, itā€™s a horrible time having been diagnosed with MS when just a few months ago it wasnā€™t something that you could imagine being part of your life.

Hopefully the worst bit of it is over, the having horrible neurological symptoms and tests but still being in limbo. Diagnosis is awful, but at least it gives you a name for whatā€™s wrong and access to disease modifying drugs (DMDs). Have a look at MS Decisions aid | MS Trust

The MS Trust have some wonderful information sheets - you can find almost anything you have a question about on their site. And of course us for personal experience. Also there is another forum which has a lot of younger people using it: https://shift.ms/

My early experience was very different to yours. It was before the days of DMDs, MS nurses, the Internet, Forums and so many other useful resources.

I hope you manage to use all the available resources to help you on your journey.

Sue

3

HI Lynette

ā€‹I too have been diagnosed with MS 3 weeks ago and find it all so confusing, just finished a 5 day course of steroids which helped with my speech but feeling very anxious the symptoms may return, as I have not been advised what to expect. all this relapsing and remission talk really confuses me. I have been referred to an MS clinic just waiting on an appointment, hoping they will help to make things clearer, and give me a better understanding of the condition.

Take care Lynette

Babymurph

4

you should be put in touch with an ms nurse, which will probably happen at the ms clinic.

this nurse will be an invaluable support to you.

he/she will discuss DMDs too.

once you have chosen one he/she will monitor how you are doing on it.

mine also referred me to Occupational Therapy - a lady came to my house and i had to show her the places where i felt unsafe. then someone came and fitted grab rails in the shower.

i was also referred to physiotherapy to help my balance.

carole x

5

Hi Sue

I read some of your posts with interest and i wonder i you would be so good as to give me an outline of your situation as i think youā€™ve had ms for many years?

I am male and 40 years of age just leading up to dmd (all stared last year, all horrendous and very much a denial situation) but would like to be told be someone who has experience (sorry not a nice experience) how it started, how long its been and what has your experiences with drugs been like?

And any advice you have would be hugely appreciated because as iā€™m sure you know the consultants are just walking text books and drug dispensaries and ive read all the Internet stuff.

Thanks

N

6

Thank you to everyone for getting in touch.

It has been what I can only describe as a rollercoaster with emotions but being able to talk to people here helps as I donā€™t feel so alone. My family and friends have been brilliant supporting me and listening but sometimes when I hit a low point I feel itā€™s all I ever talk about and get scared and afraid of my own body.

i work Monday to Friday and so have little time to think and have my 17 year old daughter and 13 year old son to keep me busy but they points I sit myself is when my head goes or when walking and my leg goes tingly Iā€™m reminded ā€œIā€™m hereā€.

Babymurph, have you heard from ms nurse yet? My neurologist said she would be in touch but not heard anything yet. Got my MRI appt through to get another brain MRI and a spine one too now. I hope you are doing ok : )

Carol, my neuro had said I can speak to ms nurse about dmdā€™s etc but worried my appt with him will be first before seeing her as he said he will see me May June to get lumbar puncture and thatā€™s when dmdā€™s will be prescribed. I am steering towards Texidera or Aubigio (sorry if I have spelt wrong) as Lemtrada worries me and canā€™t do injections myself : /

I really do appreciate you all getting in touch and thank you.

Lynette x

7

Hi Lynette,

ā€‹Hope you are keeping okay, I can fully understand your feelings when you have time to think on your own and are reminded that your condition ā€˜is hereā€™ I feel thatā€™s all I think about although I am very positive in front of my family and friends Iā€™m really quite scared.

I have not heard from anyone in the medical profession since my diagnosis which is 3 weeks ago, and feel i have just been left in limbo,a little. hoping they will be in touch soon, as many of my symptoms have returned and its only 2 weeks since I finished my course of steroids, as my symptoms affect my face, speech and walking I am unable to return to work which is very frustrating, and costly. Iā€™m also a little confused who i need to speak to is it my GP or Neurologist regarding the symptoms returning, Iā€™m getting married in 15 weeks time and fear Iā€™m will still look like Iā€™ve had a stroke.

Can I ask do all suffers have to have a lumbar puncture, I received my diagnosis after just MRI scans.

Thanks sue for your advice its much appreciated,

Take care everyone

Babymurph

8

Hi Babymurph, I know what you mean about trying to put on the brace face in front of others until youā€™re by yourself. Thatā€™s when I tend to get upset and let it out which I guess is good to release it.

I too havenā€™t heard from ms nurse and thatā€™s who my neurologist said would be able to speak to me about the dmdā€™s he has wrote for me to research so thinking at this rate my lumbar puncture appointment will come first. I too have no idea who I contact if I was to relapse and need steroids as he said my ms nurse would be my point of call.

I am sorry to hear that you are not sure where to go regarding steroid should anything happen as I canā€™t say with being in the same situation. I had a relapse October 2015 where my face dropped and was admitted to a@e with suspected Bells Palsy and then suspected stroke. Had a CT scan that was clear and they could only assume labrynthitis with the dizziness. I donā€™t blame them though back then as I had had nothing else happen and ms was never a suspect. It wasnā€™t until neuro started going through stuff with me that things added up and my 2nd relapse was a year later with my leg. Both of which I get niggling reminders damage has been done.

Not sure the protocol with lumbar puncture but he said because my leg had been affected in one he wanted a spine MRI done too and the lumbar puncture would give a little more insight.

I really wish you well for your wedding and Iā€™m sure you will be back to yourself for it : ) I do relate regarding work and finances when off. Do you have a good employer? Mine has been great and understanding to all hospital appointments etc

X

9

Hello Babymurph,

I have found you have to be proactive with the NHS - if you donā€™t have a contact number for an MS Nurse try to find one via

either your hospital or GP. If you have new symptoms talk to your GP on the phone - ask the receptionist - or make an

appointment. Bed rest is the best thing. Your body will heal itself following a relapse.

Also let your GP know about social care - help you need from others and keep them

updated on falls, walking and other disabilities. It will be important to keep your GP in the loop if you claim ESA or PIP. People

on this forum know all about benefitsā€¦ forms and can help you. Just ask away.

My recovery time with relapses has varied from 6 weeks to three months.

I would get the tests done on the NHS.

Doctors do like three tests: MRI, Lumber puncture and evoked potentials -plus two MS relapses. Itā€™s normal to get these done.

But, as I said, the NHS will do just fine.

Just a note:

I managed to work for 7 years off and on following diagnosis. But during this time I had to give up driving.

After this, I did some voluntary work - but obviously this affected our income and our standard of living. Itā€™s worth talking this

through with your partner and family. MS is a life changing disease, but

not end of the world, but you will have to learn to live with uncertainty. You never know when the next relapse will occur. When I

had RRMS I had relapses twice a year spring and autumn even with DMD!

Iā€™m being very honest here.

Ask us anything. We know.

Fay

10

Hi everyone thanks so much for all your advice

I plan to speak to my GP on Monday regarding my symptoms returning and hopefully she can advise me of my next steps, I am the type of individual who really does not like to bother anyone so I find chasing apts etc a real challenge. I am very guilty of ignoring any symptoms (I suffer another auto-immune condition) and always ignored symptoms until I ended up in hospital, I realise this is a condition that I canā€™t deny however I arm struggling to identify if any changes are new symptoms for example I have now got pain in my neck and my natural instinct is to think I have just slept funny therefore would just ignore it or is it part of MS condition, and should let my GP know, really struggling with this as all my symptoms I have had I just put down to my other condition or a trapped nerve had it not been for my fiancĆ© I would not have my diagnosis today, as I was very happy to ignore it all and self diagnosis all my symptoms to having some thing trivia

Lynette I have a fantastic employer who has supported me so much with my other condition which is very unpredictable too, just feel dreadful I have another unpredictable condition and appreciate the difficulties this will present to my employer. Particularly as I know very little about MS.

I hope you all doing good

Take care

Babymurph

11

Hi

i was diagnosed 4 weeks ago, I am awaiting appointment to get medication which is another 2 weeks away! I am off sick from work due to the nature of my job as itā€™s safety critical. I have some pins and needles in my hands which donā€™t really bother me but itā€™s the heavy legs that are making me struggle to walk. I previously had stiff legs but theyā€™ve got worse in the past couple of weeks and Iā€™m struggling to walk and itā€™s worrying me! Could this be a relapse?! I spoke to MS nurse on phone and she said she would refer me for physio and Iā€™m trying to stay as active as possible. Am going to try swimming and the wii fit but to be honest at the minute I will try anything. The neurologist who diagnosed me was so positive about it being manageable and Iā€™m trying to hold onto that but at the same time Iā€™m worried and struggling. Any advice?!

Thanks

Sarah

12

Hi Sarah,

Watch out for infections they can trigger relapses and make symptoms worse. It might be another relapse - so rest. Donā€™t do

too much.

Ask your MS Nurse or GP about:

The Community Rehab Team who can visit you at home and send the physio and OTs to do a home assessment if you are

finding it too hard to walk. They should also refer you to Wheelchair Services. Have you got a wheelchair yet? Going forward

you will find them - or a scooter - essential - they fold and go in the car. I used to only use mine during relapses. Then just on

shopping trips - now all the time - thatā€™s after 20+ years of MS though. For most people it is a very slow illness. So donā€™t panic.

In a few months you will improve. Nerve damage takes about 3 months to heal!

Go to bed relax on the sofa. For 15 or 20 years you will be okay. And then slowly become more housebound, like me.

It takes some weeks to get a wheelchair assessment, but it is worth getting on the list. These wheelchairs are free on

prescription. They are useful to have.

These assessments (above) are also good evidence if you apply for ESA or PIP or a Blue Disabled Parking or Rail Pass etc.,.

Take care.

Fay

PS. The NHS like to treat MSers at home rather than in hospital. Only my first two relapses were treated in hospital.

13

Let me know how you get on at Doctors Babymurph? I too have not got any idea what I am to do should anything happen with not having ms nurse contact me yet.

I totally relate to the putting stuff down to trapped nerves or arms and legs that felt like lead weights I used to put down to using muscles I thought I didnā€™t have or I must have had some type of virus etc : /

Regarding work my spine MRI is a Sunday which is great as itā€™s one less time to request off.

Sarah, I hope you get answers at your appointment and wondering what medication you will be going on?

X

14

Hi Fay

im trying to stay positive that I wonā€™t require a wheelchair any time soon. The neurologist who diagnosed me said with medication to manage RRMS which I havenā€™t started yet I should be able to lead a fairly normal life. Apart from stiff legs and a bit of numbness in my hands so far Iā€™ve been ok, Iā€™m hoping the heavy legs will improve.

Sarah

15

Hi Lynette

Thank you, Iā€™m not sure, s bit confused regards meds as neurologist who disgnosed me said thereā€™s 2 kinds to try and if one doesnā€™t work then can try other one but since then Iā€™ve found out thereā€™s loads and I have no idea what they will put me on.

Sarah

16

I got my appointment through to go for the lumbar puncture next Wednesday.

Really nervous and wondering how others got on with it?

Lynette

17

Hi LYnette sounds familiar, think Iā€™ve had a relapse, back of my legs were really tight and legs really heavy, my toes esp my right foot are numb! I was doing ok, was stiff legs and struggled on stairs!!! Appointment to see neuro regarding meds is a week on Friday, canā€™t come soon enough!!! I had the haemifacial spasm that lasted 2 weeks in Jsnuary! Was awful!!! Head was buzzing and ears ringing!!! Iā€™m totally frustrated st minute waiting as went private for diagnosis and apart from me phoning ms nurse Iā€™ve had nothing!!!

One thing Iā€™m confused about is that the neuro who diagnosed me said there was 2 kinds of meds and if one doesnā€™t work they will try the other one, I knew nowt about DMDs so obviously Iā€™ve since found out thereā€™s loads! Everyone saying have a read through and see which one should suit you! Surely the neuro going to recommend and I couldnā€™t possibly know what would suit me! Iā€™m new to all this and totally confused, would greatly appreciate a bit of reassurance and info, Iā€™ve just got disheartened after being so positive by the wait for meds and the fact I seem to have got worse.

thanks

Sarah

18

Hi Lynette & Sarah

You will do great next week at your lumbar puncture, Have you been seen by MS clinic or MS nurse yet, I know last time we had a chat you like myself were still waiting. Let me know how you get on after your apt next week, will be thinking about you.

Sarah keep your chin up Iā€™m sure you will be given the right advice once you have been seen by your MS nurse, I think you right to think you will be recommended the right DMDā€™s for you, I think its fair to say the waiting to be seen by medical profession is what frustrates us all the most. I am confident once we all see our MS nurse we will have more knowledge of our condition, feel less scared by it all and all be on right medication to get us back on track.

I feel for you Sarah as I too suffered with relapse at the weekend, but as mentioned in earlier correspondence I made an apt to see my GP (wasnā€™t sure if this was the right route as still waiting on my apt for MS nurse) she was fantastic and re-assured me that due to a water infection I had would most likely be the cause of some of my systems returning and after a course of antibiotics I should recover from MS symptoms and feel better once infection cleared up, Great news to share Sarah I now feel much better and apart from a little numbness on my face and lips almost symptom free, and of course feel so much better due to infection nearly cleared up.

Please keep your spirits high girls you both doing great and are probably so much stronger than you think.

Lynette if you still without an apt for MS clinic or MS nurse I would defentialy recommend you speak with your GP, if you need anything or symptoms return, if they anything like mine you will feel so much better knowing they there to support you. My GP not only explained about how some infections can make your symptoms return temporarily she spent a lot of time talking through MS and just listened for a while about how I was feeling.

Take care girls, catch up soon I hope

Babymurph

19

Hi Babymirph

Thank you again for your reply, itā€™s neuro I see a week on Friday, apparantely I see MS nurse after that?! I presume itā€™s neurologist who prescribes my medication, according to my letter it suggest this then says I would benefit from ms nurse for advice on diet, exercise etc and to be referred for physio.

Thank you

Sarah

20

Hi Sarah

Iā€™m sure you will feel so much better at your apt sugar and get all the answers you need, will be thinking about you and you must let me know how you get on. Will be rooting for you Sarah, stay positive sugar.

If I could be of any help, although not full of much knowledge about MS, but always here to listen.

Take care of yourself

Babymurph