Hi I’m a 22 year old woman and have been waiting for a diagnosis since November 2020 and I’m starting to panic.
I went in to see my neurologist last week. I had already exepted the possibility of having a diagnosis of ms through my own research and looking at my symptoms and medical history before all this started.
But this has been flipped on its head now as when I saw my neurologist instead of getting the answer I was expecting I was informed it could be one of 3 things.
MS being one of them and a quite aggressive form. The other 2 options where very rare and quite newly discovered the first one was MOG which has a better prognosis over the MS diagnosis and the other i didn’t remember/don’t want to remeber the name of as my neurologist wouldn’t go into details but it is a verry poor prognosis and allot worse than MS.
They have sent my blood to Oxford for testing for both these incredibly rare things and it could take up to 6weeks if not longer as they do the tests in batches. I’m so frightened about the outcome of the test.
I’m scheduled for a phone call on the 26th of May with my neurologist to discuss my diagnosis if the results have come back from the blood tests at oxford or if the results from my spinal fluid show the bands like in MS basically this makes it more clear its MS where dealing with and most likely not the other 2 things.
I just wanted to ask if anyone els has experienced anything like this? And what you did or would do in my situation waiting for an answer? I know some people have waited allot longer than me for answers so I should be counting my blessings. I just keep getting caught up in the chance it could be a super bad outcome.
I am so scared and anxious, I’m just starting my adult life after university and I feel like I am going to have everything taken away in the blink of an eye.
Sorry my first post on here is so down heartening. I hope I can be more positive in the future thankyou for reading x
Hello Rebecca, I know this is difficult to do but try to keep your stress levels down as this can exacerbate symptoms. Easier said than done as I know from personal experience. But you need to wait for the results of the tests before thinking the worst. Help and support will be there for you especially as you are so young. If it is MS there are new Disease Modifying Drugs that can slow the progress down so you can have a good life. I was diagnosed early in life before my degree but have coped with it for many many years. I went on to have a great career, got married, had children, lived all over the world and have had an exciting life so please don’t think your life is ruined because it might be MS it’s just something you have to learn to live with. But life can still be exciting and wonderful so try to think of all the good things - as I said I know it’s hard and I am not trying to minimise your worries as I’ve been there and it’s a hard time. I hope you get answers soon as being in Limboland is really like being between a rock and a hard place. Anyway I just wanted to let you know people are here to support you and are thinking of you and wishing you the best. ((((HUGS)))) Maz
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Hi Rebecca, I’m in a similar position as you. I was in in the hospital all last week and while my neurologist has said he’s nearly certain that I have Primary Progressive MS, we are still waiting for all my test results to come back from Oxford to completely rule out other possibilities. While I feel good knowing that I’m not going crazy and there actually is something medically wrong with me (I ignored or tried to power through my symptoms for a year before seeking medical intervention partially due to stubbornness and partially due to the pandemic). It is really scary and it feels really unfair (especially when you’re young, I’m a bit older than you at 34 but still felt like I was “supposed” to be physically fit and healthy at this age) however I’m trying to approach the diagnosis process as one more way to understand my body and get the help I need rather than an end itself and it’s really lit a fire under me to start checking off my goals and doing as much active stuff as possible while I can still get around independently. Since none of us know what the future holds, it makes the most sense to try to live in the moment. I know that’s hard but I bet you’re going to discover that you’re more resilient and stronger than you ever knew. Big hugs from Bristol, -Gina
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Thankyou so much for your kind and amazing words when I posted this to the ms forum I was so overwhelmed and stressed and having both of these replies from you Regina and theorising helped me process the information I was given better and made me realise I am not alone in this journey so thankyou so much both of you.
I wanted to message back at the time but I was so overwhelmed and didn’t know how.
Finally I have been given some answers for my final diagnosis both the blood tests came back negative and I have officially been diagnosed with RRMS. I have got leisions in my spine, brain and optic nerve and they have worked out that I have had 3 seporate attacks in just the past year my brain being the newest development and most recent in the last month or so.
I’m starting treatment in arround 2 to 3 weeks time and have chosen through my neurologist recommendation to be placed on tysabri infusions in hospital once a month. Im nervous but feel verry confident in this decision as the team which has been placed arround me make me feel really relaxed and have all the wisdom and experience I belive they know what is best for my long term journey.
I’m feeling more and more confident everyday I still work 27.5 hour a week I bike too and from work on my new electric bike twice a day and I use a walking stick through my day to help me with my balance and pain management I feel like I am able to increase my activity slowly more and more but I do have my off days where i just need to listen to my body and stop if the legs don’t want to go it isn’t worth fighting it just do as they say and rest if im feeling tired sleep if I need to and if i feel good I do what i love when I can.
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You sound much better! Glad you got a diagnosis, but sorry they couldn’t have said “Oops; we made a mistake and there’s nothing wrong with you.”
Keep thinking positively. Yes, you’ll have moments of depression when you think too hard, and there may be some lifestyle changes to make, but mostly your life will just continue as it has. Focus on what you CAN do now rather than on what you can’t.
Rebecca,
You sound really strong, resilient and positive in your message. Getting a life changing diagnosis is really overwhelming and stressful. I have good days where I feel optimistic and bad days when I feel really worried and exhausted. I’m glad you and your neurologist have decided on a course of treatment. Good luck with the infusions! I think you should work as long as you are able to, especially if you’re work is fulfilling. How do you like the E-bike? I’ve been thinking about getting one, and they also have conversion hubs you can buy to convert a regular bike to an e-bike. Take care of your body, your nutrition, your stress. We can do it and live as well as possible with MS!
The e-bike is amazing I have a relatively cheap one from Halfords it’s a step though frame with a removable battery at the back. I struggle sometimes to pull the battery out as my hands can become weak but I just ask for help when I need to. It is super easy to charge the battery in the house and i use it 4 times a day I work a split shift day so i go to work and back for the morning for 2 hours to work and then go back to work in the evening for 3 hours then back home for the night. I don’t drive so this has been a lifesaver and meant I could keep my independence biking like i did before just with help from the electric motor I don’t even break a sweat haha. I do have bad days though like everyone and I have to use a taxi but on my good days i am so thankfull for my bike
My wife started with RRMS in her 40’s. We think she had this earlier. She had an MRI and a lumbar puncture. The blood test was not developed and is not widely used in the US yet. I learned early on that waiting, without feedback, may not be in your best interest. I became known as the “Mad-man”, of our teaching hospital. I showed respect when my wife was given respect, but in its absence, I fought for my wife since she was not able to do so herself.
Our systems are very different, but waiting five years for an MS diagnosis strikes me as absurd. My lack of patience is partially due to my being a Bi-Polar II, a Rapid-Cycler, with Long Term Depression Disability. This might have contributed to my attitude regarding my wife’s care, but our geriatric doctor says I was totally justified in everything I said and did. I stand by my actions.
Rhoda passed away in June 2018.