Newly Diagnosed and feeling lost

New diagnosis and before diagnosis
1

Hi everyone

I was diagnosed on the 16th of November after an MRI scan and two lumbar punctures. I am still waiting for an outpatient appointment to be sent through the mail for me to attend the MS clinic. It was first thought that I had an nerve entrapment in my left arm back in February when my arm went completely numb. I woke up on the 10th of November completely numb from the chest down and could hardly walk. I have been diagnosed with MS but still do not know what my MRI showed fully. As I havenā€™t seen anyone since leaving the hospital on the 18th of November, Iā€™m feeling pretty lost. I feel like I have just had my livelihood ripped away from me. I expected to go to hospital and come out feeling better or being on the mend. I never expected to be told I would never be well againā€¦ I just have so many questions and thoughts running through my mind. I have such a supportive family, but I am still experiencing new and different symptoms every week and donā€™t know how to deal with it. What I should do and what I canā€™t do. Feel like I am in limbo right now. I would really love if you could give me some advice on how you all processed your diagnosis?

thank you x

2

hello

It is very early days for you.

You should have a MS nurse, phone the hospital where you were diagnosed and ask for contact details of your MS nurse.

This nurse will liaise closely with your MS specialist neuro and will guide you through your options regarding Disease Modifying Drugs (DMDs).

Itā€™s an even more dodgy time to be diagnosed with face to face appointments very rare due to covid.

Meanwhile have a look on the MS Trust website (mstrust.org.uk) they have lots of information about treatments,

Keep yourself as healthy as you can, Eat well, sleep well etc.

Good luck xx

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My goodness, what a frightening time you have had. Thereā€™s no nice way for MS to introduce itself, but that sounds particularly brutal.

I can well understand that you are feeling at sea with it all. And it is a pity that you have not had a chance for a follow up appointment yet to discuss where things go from here. On the other hand, it isnā€™t always a bad thing to have a chance to let things sink in a little and (as you say) start to process them before being plunged into the next round of what to do about treatment and so on. One thingā€™s for sure, getting an MS dx is a very unpleasant thing to happen, regardless. Iā€™m afraid you can expect to be feeling bruised and unmoored and frightened and mood-swingy, and tearful and all the rest, and thatā€™s OK. Just be gentle with yourself and let yourself feel what you feel. It will pass in its own good time, but that wonā€™t be rushed. So please donā€™t be disappointed with yourself if youā€™re a bit of an emotional mess. In my own case, it was months before I could mention MS without collapsing into howls of grief, for instance. That brave face I tried to find remained elusive for some time. All Iā€™m saying is, it is OK to feel bad, so please be donā€™t expect yourself to feel OK about any of it. But I promise that you will not keep feeling like this. The period after dx just totally sucks, and there in nothing for it but to hold on tight and get through it. Things will look brighter on the other side, even if it is hard to see that right now. It truly is possible to make a good life for oneself with MS. It might feel like the end of the world at the start, but it really isnā€™t.

One thing that might help you through - it helped me, I think - was trying hard to deal with the reactions of those who love us. Quite honestly, thatā€™s a job of work in itself, and you might find yourself pretty busy, emotionally supporting those people as they react in a range of ways, not all of them helpful. But actually that can be a useful distraction from your own worries, even if you do find yourself smiling wryly and wondering who is supposed to be comforting whom, exactly?. This applies with bells on, if youā€™ll excuse the expression, at this time of year (again, speaking from my own experience here). So I wish you very good luck with that too.

Alison

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Hi, I am also newly diagnosed early this year and can only offer you a little hope and advice on what I wish I had done differently at the start. On the day I was told I had MS I felt a slight relief that I finally knew what exactly was wrong with me. This was followed by around 2 nonths of an attitude of I donā€™t care Iā€™m just going to get on with things and ignore it. This for me was a downfall as I didnā€™t take time to process and digest that I had a condition. I suppressed my emotions and that impacted me in months 3 and 4 when reality hit. I suddenly felt depressed and useless to anybody I started to push those close to me away from me and became cold and distant both personally and professionally. I would then suffer a new symptom and that would then cause me to spiral further down. I really felt low and slipt into the self entitlement trap of why me. It wasnā€™t until months 6 and 7 I started to see that I could either be like this for thr rest of my life or learn to adjust some things and find me again. What I believe would have really helped me would have been to not shut my emotions down and suppress what I was feeling. I didnā€™t take the time to process what was happening and allow myself to feel hurt. I didnā€™t talk to people because I believed nobody knows what Iā€™m going through. My MS nurseā€™s are absolutely fantastic so would definitely keep pushing for contact details. Over time an acceptance of this is now my life came in and positivity comes back into your life. Iā€™ve learnt to laugh at my balance issues and memory problems where as before it angered me. This was just my personal experience and what I would have done differently in hindsight. We all deal with things differently and you deal with it how you feel is right. Having an avenue where you can let out your frustrations is very helpful so please feel free to message me directly should you need too. I wish you all the best with finding what works for you! John

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I am newly diagnosed but seem to have had a better experience of testing, discussion, scans etc. I have had 3 face to face meetings with my neurologist plus a couple of 'phone calls with him. I have had 2 MRI scans plus a lumbar puncture to confirm the diagnosis and fortunately have not had to wait too long. Itā€™s the waiting that is most difficult as you imagine all kinds of things. I have been told that Iā€™ll have access to an MS nurse too. My reactions are ones of relief and sadness. I am trying to deal with symptoms as best I can and want to focus on what I can do, not what I canā€™t do. I wish you all the best. Take care x

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Hi,

Iā€™m newly diagnosed too, numbness all down left side in May 2020, phone call with GP sent me for a full spine MRI in June and the lesions found on that started my road to diagnosis but Iā€™ve been told Iā€™ve probably had it for 20 years. Because of Covid, I never saw a GP or Consultant face to face until October and apart from that one face to face consultation with the neurologist, another MRI with contrast, and a phone call in December to say I do have RRMS confirmed by the 2nd MRI with older lesions on the brain and active lesions in the spine, Iā€™ve just had a face to face meeting with the MS Nurses this week. Itā€™s been a very hard year getting appointments and tests for anyone suffering from anything ā€˜other thanā€™ Covid, and sadly this will only continue to be the case until covid has abated.

My emotions before I knew I may be looking at MS, were fear and worry as my symptoms were scary. In October after speaking to the neurologist and finding out I might have MS and that Iā€™ve probably had it for years, my emotions turned to anger, i.e., WHY has no one picked this up before? WHY have my health issues always been blamed on something else? Could I have had a better life if someone had seen this sooner? But it was great advice from this forum that helped knock that anger on the head, realising that looking back in anger is pointless and wonā€™t help me now, today and tomorrow. Then my emotions went to impatience and frustration with Covid situation and the knock on effect of my cancelled appointments (because of Covid) and the urgent need to know once and for all if I did have it, so I focused on knocking on doors and getting my medical records and fighting for a diagnosis before the year was out. I got this on the 21st of December by telephone, RRMS confirmed. Then, I just felt completely emotionally numb, even though I knew it was coming. So, Iā€™ve cried, got angry, doom-scrolled MS, felt utterly sorry for myself, but slowly, slowly, that dissipates. What helped enormously was speaking to my MS Nurses for the first time this week, a face to face meeting, with every worry and every question I had accumulated patiently answered for me. I cannot recommend speaking to them enough, it has really helped me.

If you are concerned about what your MRI says, either ask for a copy of the report from your GP, or apply for your Medical Records from the hospital (they are free but take 30 days) youā€™ll get 2 cdā€™s one with copies of all MRI written reports along with all the letters your neurologist has written to your GP, you also get to see his hand written notes that were scanned in too, if you can read their handwriting! The other cd has the MRI images and you get instructions on how to see these.

I also suggest calling your neurologistā€™s secretary for help knowing when youā€™ll be seen next and getting the MS Nurses contact details. I honestly think going through your GP to get the info on this is a waste of time, please call the neuros secretary instead, I canā€™t stress enough that in our current Covid situation, you HAVE to be proactive to get seen or heard. This has worked for me.

So my feelings now? Pragmatic. I canā€™t change what I have, I can only deal with it. Burying our heads or getting angry or feeling sad and lost are all completely valid emotions in the beginning, and I have no doubt that at times we may even slip back to them once in a while when things overwhelm us, but we have to believe and know that they will pass and we will prevail and find our strength and go on each time we have set backs.

Best of wishes to you x

7

Hi everyone

thank you for taking the time to comment on my post. I still havenā€™t heard ANYTHING about the clinic or my ms nurse. I called my gp and she had written to them to make sure I am on the waiting list, but hasnā€™t heard anything back either. Iā€™m doing better now. A lot of my symptoms have gone away, but some of the more irritating ones have stayed- like I get very sore arms for periods during the day, sometimes making them unusable for a short period. Also, I have vibrating down my arm and legs, which is just more annoying than anything. My eyesight got really bad before Christmas, and I was so scared that my ms had go to my eyes too- but it turns out itā€™s just a natural thing- so I was weirdly super happy lol! I was really down in the dumps for a few weeks after my diagnosis, but now I feel like I will be okay. I am not going to let this ruin my life, but I will need to learn to live with it.

Just canā€™t wait to get to the clinic and actually speak to someone about the next steps in my journey are.

thank you all for your support, your comments made me feel less alone at a really difficult time in my life x

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Hi John. Thanks for sharing your experience and your hindsight for others to draw on. Do you mind me asking how long you had symptoms for before MS was considered - and what those symptoms were?

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Hi Anne, My diagnosis was a very long drawn out process if Iā€™m being completely honest. In Summer 2017 I walked out of the gym and suddenly had blurred vision. I just thought I had low blood sugar until the next morning I woke up near enough blind in my left eye. I went to eye casualty and was discharged as they couldnā€™t find a reason. The next day I was completely blind in my left eye so visited an optician who referred me straight to hospital. I was told I had optic neuritis. My sister suffered the same and was diagnosed with MS so had a feeling it could be that. My balance started to become and issue, pins and needles down my arms and through my fingers, started walking into things and fatigue set in. Days I could barely move out my bed and if I did manage to get up I was laying down agaim very quickly. My diagnosis took 2 years as I saw the neurologist 6 months after being referred. Who then sent me for an MRI but somehow I got lost in the system for 12 months. After my GP chasing the hospital aswell as me for 6 months I finally had an MRI. Then took a further 6 months to see the specialist whoā€™s first words to me were ā€œso when was you diagnosed with MS?ā€ Despite all the issues leading up to my diagnosis the support Iā€™ve received after from the nurses is unbelievable.

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Hi, So glad to hear you feel really happy! I have a question about the vibration you feel in your legs and Arms. Does it feel like an electric shock sensation? I have something called Lhermitteā€™s signs that are present during relapses. Itā€™s a shock sensation that starts in my neck and travels down my body to my legs and arms. Very uncomfortable but has become more manageable with medication. I hope you manage to get in contact with the MS Nurse soon. Take care

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Hey! The only way I can really describe it is itā€™s like my nerves are guitar strings and someone is plucking them. The vibration completely goes away if I lie very still, and it is always there in my legs but not always in my arms. I also get a sort of shock down my back and legs if I look down at the ground too quickly, which can be painful. Hopefully not to long before I see someone now, fingers crossed! I go back to work on Monday, which is making me nervous as Iā€™ve not been in since my diagnosis x

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Hello John,

I too had Lhermitteā€™s sign in May, although I had no idea it was this at the time and only found out at my first Neurologistā€™s appointment in October. I had numbness and tingling that started in my left arm and leg, a few days later it joined up down my torso and eventually into my groin, it lasted nearly 6 weeks in total and a itā€™s worst, whenever I moved my head Iā€™d get shocks down my spine from the top of my neck right down to my fingers and toes, eventually the shocks on moving of my head abated, however the numbness and tingling was always there down the left side whenever I moved at all, the only way to stop it was to lie COMPLETELY still, which was just not possible for me! I also had weakness in my left leg, my left knee kept giving way and my left foot would slap down when I walked. It was a very scary time and during Lockdown too! :frowning: Since then Iā€™ve relapsed at least another 3/4 times, but that was the only time I had Lhermitteā€™s signs, that I know of. I did have a scary episode in the car whilst driving in August (but I was sitting still driving on the motorway, so Iā€™m not sure it was Lhermittes), where I had the most intense shocks and severe itching that started in the top of my spine, up my neck and over the back and top of my head, whilst simultaneously having shocks from my left knee to my toes, boy was that a terrifying time!

May I ask what medications you were offered and which you decided on? Iā€™m glad whatever youā€™re taking is working for you, Iā€™m on steroids, day 3 today, and the MS Nurse has offered me Mavenclad or Tysabri going forward, so Iā€™m trying to decide which one.

Thank you :slight_smile:

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Hi Yorkshire, Wow you really suffered with them the same as I did! They are truly awful! I had a cracking whip sound in my ear then my whole right side gave away. So my first episode I was given steroids which made them stop completely after about a week but then 3 months later they came back again. Due to Covid they refused to give me another course of steroids so put me onto Gabapentin starting at 900mg a day but that has been increased to 1200mg on a 6 months repeat prescription. Touch wood I have only had one shock sensation in the last 2 months. I am taking Mavenclad had my first dose in November, 2nd in December and now wonā€™t take it again until Nov. This is purely my own opinion on it but I can say I have never felt so good. I havenā€™t had a relapse in the last 10 weeks and my quality of life has vastly improved. It does come with some downsides mainly child conception, they stress the importance of a male to practice safe sex no matter what your relationship status is. I hope you find the right medication for you :relaxed:

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Thanks for sharing Jim. I canā€™t believe what struggles people have had to get proper attention and diagnosis of symptoms. Iā€™ve been having symptoms since Sept & theyā€™re not going away - the biggest thing Iā€™ve taken away from hearing about the experiences of others is that I need to keep pushing. Iā€™m hopeful my issues are not MS but an A&E GP mentioned it and based on what Iā€™ve read online it seems a possibility. Hoping to push things forward next week with another GP appointment with a new surgery. Thanks once again for responding and sharing - itā€™s really appreciated.

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Hi I have very newly diagnosed with MS six years ago I was diagnosed with MS then a year later I was told I donā€™t have MS but left me without any diagnosis but in unbelievable pain I was put on a set of medication manly painkillers and given crutches and that wee four wheeler with a seat in the middle my mobility was definitely worse so in between all this I had to give up my full time job and then with this pandemic of covid my mobility has got a lot worse I can basically only walk a few steps then I am out of breath and just nackerd my mental health has been badly effected I lost my dad and best friend to covid last September I have two sons wich I love with my hole heart anyway my youngest son just doesnā€™t want to come and see me witch obviously brakes my heart and I obviously ask him all the questions has dad upset u is there something wrong and all the questions to do with that with no reply I have broken up with my fiancĆ© how I was suppose to marry on June and now I just find live so difficult I find it so hard sometimes impossible to clean my house and feed myself

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Wow, youā€™ve been going through so much just recently. No wonder you are finding things really difficult. Hang on in here. Glad you have found this forum as people are very friendly here and will understand what you are going through.

So has your MS diagnosis been newly reconfirmed? This pattern of diagnosing MS and then a year or so later changing their minds, and then just abandoning the person seems to happen too often. I think that must be far worse than being left in limbo for years, and will destroy any trust the patient has in neurologists.

I hope you have a decent relationship with your gp, and they are helping support you, as you sound quite low at the moment. The covid lockdowns and restrictions on top of everything else make it so much harder. Certainly at my GPs practice they seem very aware that people are struggling emotionally, and that seems to be a priority, checking on peopleā€™s emotional health even if they go to them for other issues, because it is affecting so many people.

Take care.