So it’s been almost a month since this all started. I have been working with a physio twice weekly and an OT once a week for equipment and energy management. I also went to the rehabilitation centre and met with a doctor who asked me lots of questions for about 2 hours. Next appointment is the 13th November with neurology doctor. I have some feeling back in my waist area but my legs are still very numb and I am now using crutches to walk. I had hoped this woud go back to normal but I am afraid this is what I am stuck with now. I have read so much about people’s symptoms and hoped my first episode would go back to normal but it hasn’t. Still no firm diagnosis and this week I have really been struggling with terrible neck and shoulder pain. Feeling really low 
Hi Satori Don’t worry that you’re not completely recovered from the initial attack. Sometimes it can takes weeks or (more likely I’m afraid) months for a relapse to remit. You might find that it doesn’t entirely remit, that you still have some residual sensations / numbness / pain / pins and needles / whatever the relapse has manifested as. But one month isn’t long enough to decide that this is as good as it gets. My very first relapse took months to remit and it almost entirely did. I had some residual numbness in my feet (I don’t think I’ve ever felt them properly since) But you tend to compensate for residual symptoms. Obviously, I am assuming, as I think you should too, that you either had a CIS and will have no more attacks, or that you will have relapsing remitting MS. In which case you will find that not all relapses are as bad as the one you are still suffering through. Also, if it is RRMS, you will get some disease modifying drugs and relapses will be greatly reduced in number and severity. So, I understand that right now you feel like this will be as good as it gets, because after weeks of being virtually the same, it just seems that way. But it isn’t necessarily so. Chances are you will be able to decrease the crutches from two to one, then maybe a stick, then perhaps nothing at all. Keep working with the physio and OT. Try to improve your core if at all possible. And try not to be too despondent. A month probably feels to you like years, but really it’s not. And see if you can believe that things will continue to very slowly improve further. Sue
Hugs,thinking of you
Hi Sue, Thank you for replying. I know I should try to wait but for this to be so severe for a first time episode I am finding it hard. The last doctor said they were unsure they would name it MS because this is literally the first ever MS type symptoms I have had. I also need to express to my doctor that we had just begun trying for a baby and this is still a dream of mine so I would prefer not to take medication. It’s comforting to know that it could still fade with a little more time and I will try to be kinder to myself. It just feels like everything has been turned upside down and I am carrying an awful guilt that I am putting my boyfriend through all of this.
So I have my appointment with the neurologist on the 13th November and I have to admit I am having sleepless nights. I am so worried about the appointment and hearing the word’s “You have MS.” I have been wondering what they might suggest as next steps. If you get a diagnosis do they begin you on medication right away? I ask because my boyfriend and I had just begun trying for a baby before this happened and that is still our hope. I guess my question is once you were diagnosed what was the game plan?
Hi Satori .
Well first things first , your neuro will look at your mri scans , and if youve had a lumbar puncture he will look at that too . He will ask you lots of questions about your past history ie have you had any attacks , numbness ,pins and needles ,anything that may be classed as an episode , these have to have lasted longer than 24hrs , and be seperated in time .
He may well then give you a medical in his office , and ask you to do certain tests to help convince himself .
Mine asked me to do all the above and only then did he say right sit down and ill show you whats happening . He turned the computer screen on and showed me the damage to my brain and spine ( very sobering believe me ) and at that point he told me i had ms .
These guys are good and they will only give you a dx if their 100% sure you have it so you might not even hear you have ms , i pray you dont .
DMDs . They will try to start you on these a couple of months after dx , you have to see the nurse and talk it through with her , most of them are fab and are experts in knowing whats best for you and your treatment .
Oh and lastly when you go to see your neuro take someone with you , as you wont remember all you wanted to say , take a pen and paper to write it all down .
I hope you are given a negative dx .
Best Wishes Iain .
Thank you for replying Iain. The last conversation I had with the rehabilitation doctor she said she was still not sure that it was MS as the only other symptoms I have been having is dizziness but this has been ongoing since I was 18. The last dizzy episode I saw a specialist for ears and he confirmed I had positional vertigo due to a crystal in my ear. I guess it will depend on what the neurologist says but I am reluctant to take medications. My MRI only showed a lesion on my spinal cord but they did not have the lumbar results. …perhaps that will make a difference. I’m desperate to get back to work and start doing as much as I can. I don’t know if I am being unrealistic but I want to do as much as I can while I still can. The feeling in my legs and feet has not returned but I am more mobile and learning to walk without the full feeling. I am just terrified how the results will change my plans for children and living my life.
Hi Satori86, Hopefully you don’t have MS and you will get a much kinder explanation for the symptoms you’ve been experiencing - and can leave this board and forget all about us. Just in case it is MS I will give you advice I was given last year when I was going through diagnosis: - MS is not the beast it once was - medical advances mean for many it is a manageable condition - and there are lots of people with MS living full, active happy lives - having and loving their families - New drugs in the pipeline (for managing the disease course and its symptoms) should mean it will become even more manageable in our life times - It is a “snowflake disease” - highly individualised to each of us and horribly unpredictable, but there are things we can do today to stack the odds regarding how our own disease progresses in our favour. The choice of the right DMD is part of this - as are smart lifestyle choices to guard our brain health My only definite MS symptoms were a few weeks numb toes and groin in Feb 2016 (not painful or disabling in anyway - just numb). The numbness cleared up with steroids and hasn’t returned. My MRI showed numerous lesions and it is possible an episode of vertigo I had in 2015 was an initial attack (but like you this was diagnosed as BPPV and was seemingly fixed at the time with the epley manoeuvre) One of the first questions my neuro asked me was whether I had or wanted children. I was 36 (I’m now 38) and this was a question my boyfriend (now fiancée) and I had been dancing around for a couple of years without landing. At the time I read a lot into the issues regarding pregnancy/DMDs/motherhood - and just in case it is helpful I’ve jotted down my own notes* and thoughts from that time below - together with resources in case you haven’t otherwise found them - The MS Trust “decision tools” on DMDs has a helpful breakdown of the different DMDs, their side effects and whether you can take them whilst trying to conceive/pregnant - MS Decisions | MS Trust - The MS Trust also has very helpful papers on conception/pregnancy/birth - Pregnancy | MS Trust I was (am…?) aware that time is against me if we want a family. Despite this, Richard and I decided that the best course of action for me was to push for Lemtrada as soon as possible - and to postpone any final decisions on family planning until 4 months after the second round when I would be both protected from my MS by a highly effective DMD and “clean” from having MS drugs in my system which could harm any baby. I’m over three months post Round 2 now - and will be good to go (!) in a couple of weeks if we decide that’s what we want. To be honest, I’m still not 100% sure I know the answer - but on balance think probably not. I think this would have been the case even without the MS diagnosis, and that certainly isn’t a decisive factor, but it is something new to think about. I’m just grateful that with lem out the way I can now focus on that question rather than what to do about my MS Some of factors I took into consideration in landing this course of action were - risks of postponing getting pregnant if I decide that is what I want given my age - risks of postponing DMDs whilst deciding if I want a baby/trying for a baby (and being exposed to relapses which could cause permanent damage and potential hinder me from being the mum I would want to be) - risk of starting a DMD and then coming off of it to get pregnant (increased risk of relapse on rebound) - risk of a relapse after giving birth (women are more susceptible to relapses then, but less susceptible during pregnancy itself when the body seems to protect itself) - issues for birth / pain relief itself (non that I could find - hurrah!) - risks of being a Mum and having MS (e.g. on physical/financial/emotional aspects of my life and Richards and ultimately babies) [I’m hoping that getting straight on to a highly effective DMD is the best mitigant here] - risks of passing on MS (no-one else in my family has it - and it is not hereditary but there is a genetic link. My personal view is that as the odds are still very much against it (1:50 rather than 1:600) and as it is a manageable condition (hopefully with a cure in any child’s lifetime) this isn’t a big factor and was one I am putting least weight to I’ve responded well to Lem, had no problems with the infusions on either round and made it quickly back to work/gym/fulltime life. My latest MRI showed no new lesions and evidence that old lesions were fixing themselves and I’ve had no new relapses since the initial one in Feb 2016. There is still a risk I will have picked up longer term side effects - but I’m hoping the monthly monitoring means these will be quickly picked up and manageable if I do get them. So I’m feeling fit and well and am bright and optimistic about my future - MS notwithstanding - and am hopeful Ive given myself the best chance of staying that way - both for myself and for my family (including any new members we may decide to introduce). I sincerely hope that some of that is helpful (and not overwhelming). It is a very personal perspective and there are never right or wrong answers or approaches to this insidious disease - I just wanted to lay out my thought process and approach to making sure that my options for the future, including regarding family and physical health, were not cut short by an MS diagnosis - to help take away the fear that a diagnosis could cut short some of your own options K xxxx * After going into complete catastrophe mode on diagnosis (trying to get Richard to leave me and checking on the cost of dignitas) my default mode of “massive control freak” (or as my neuro put it “frightening efficiency”) drilled into me from years as practicing as a corporate lawyer in the City kicked in. Interesting the things you learn about yourself in time of crisis!
Hi Katy. Wow what an incredible reply! I’m 31 so I know I have time still to decide but I certainly want to make it a priority in my decision making. My first MRI showed three brain lesions in August but I had no symptoms and was booked for a second in November when this episide ocured. The MRI in the hospital showed the lesions on my brain had gone and one on my spinal cord was causing the issue. Thank you for the detailed reply it will certainly give me a lot to think about and research. I am with a physio twice a week currently and an occupational therapist. I am fortunate that I am not suffering fatigue or anything that seems to plaque most. The feeling has not completely returned but I am certainly a lot better than I was at the time of writing the first post. But I am terrified. We had talked about 2018 being our year. Our plans for our future, marriage and a family. The suddenly October and my life changes. I will make sure I talk with the neurologist in full but really thank you so much for sharing your process and information it will be invaluable!
Glad to have been helpful. As for 2018, it is going to be an AMAZING year - hopefully for us both! Richard humoured my attempts to push him away - and then made it clear he was going nowhere and that we would do this hand in hand and step by step. He proposed last Christmas (a plan from before diagnosis) and we get married in May - and then head off on a three month honeymoon trekking and exploring Namibia. We are also hoping to move to our “forever home” in the countryside. Even with the MS diagnosis I’ve never felt happier, healthier or more excited about my future. So whilst this bit is tough, even if you get an MS diagnosis you will get through it and your future will still be there. Stay strong and good luck xxx
It’s interesting because I actually did the same thing. I told my boyfriend now was his chance to leave and I would understand if he wanted to walk away. We bought a house together last year but it wouldn’t have been impossible to seperate it out. He got so annoyed with me and really shouted that I was being ridiculous and that whatever happened we were in this together. I have been carrying a lot of guilt but he has been wonderful. You sound very similar to me personality wise. I have lists everywhere with information scribbled down and while I don’t have an MS diagnosis currently I have already been learning all I can and making plans for worse and best case scenario. Eeeeeek getting married!!! Congratulations it’s not too long to wait now!!! I hope you have a beautiul day and also an unbelievable honeymoon!! Zoe X
So I am back from my neurology appointment. She confirmed I have lesions on my brain specifically around the area where the spinal fluid is kept. Also a lesions on C6 which caused this currently numbness. Also o bands in my CSF. She gave me 2 options. Begin medication or wait and have an MRI again in 3 months. She still can’t confirm 100% that it’s MS but the signs are highly likely. I have decided to wait until Jan 2018 and have another MRI to see whether this was a CIS or in fact MS…
Fingers crossed for you. Try and put it out of your mind and enjoy Christmas. Hopefully it’s not MS - but if it is you’ll still be you and your future will still be there. And 2018 will still be awesome. Xx
Well, that’s not exactly what a person wants to hear the neurologist say - is it? - even if it isn’t a massive surprise.
As Katy said, try to file it toward the back of your mind for a little while. It can be a really helpful thing to have some proper time to process things in background mode for a while, without time pressures or need for urgent decisions. I had that fallow time too - unfortunately it did turn out to be MS in my case - but that space in time to let my brain do some quiet processing in the background really helped me get my thoughts in order for the next phase.
Good luck.
Alison
Thank you both for your replies. I still feel in limbo but I am reluctant to start medication when there is still a question mark as to what this is. I know that the likelihood is MS and I would be fooling myself if I thought other wise. I know there is still a chance it could be CIS and nothing more but I have prepared myself for the worst. I told my doctor we wanted to try for a baby and she was very enthusiastic about us trying. She said that the lesions weren’t too bad and there was little difference when the contrast was added. I’m also not suffering fatigue so she feels that is a positive sign. But I am not stupid and I won’t spend the next three months with my head in the sand. Time will tell I guess. Currently I’m having serious issues with my digestive system and have an appointment to see a gastro doc. A few months ago they thought I might have crohns… Feel like I am in a vicious circle of immune issues. Onwards and upwards I guess. I will update you all when I know more. Thank you so much for your support over the last few weeks. It has made a huge difference during this time and helped me keep my head straight through some very dark thoughts. Xxx