I am grateful to see there is such kindness in the MS community. With that said, I am sure it is tiring to constantly be of reassurance to those of us who have anxiety and who are struggling with this idea of “is this anxiety or MS?” I have rewritten and scrapped several drafts that listed out all my symptoms and fears and realized that what I need isn’t a confirmation or dismissal of my symptoms, but rather…a community who is willing to empathize and send their support to someone who is in line for a possible diagnosis.
The past few months, my mental health has been deteriorating, and the thought “Could I have MS?” has been eating away at me. I got diagnosed with optic neuritis in Oct 2019, and although the neurologist said my MRI came back “normal” and that the issue was probably caused within my eye, my anxiety brain has been convinced that for sure this must mean I will develop MS. Since then I have had bad bouts of anxiety attacks and strange symptoms that COULD be MS and that COULD be explained away as anxiety (since I have an anxiety disorder). But since I have an MRI on March 31st (this time with an MS specialist), I have really been struggling in this “limbo” stage.
I feel the day is so far away (although I know many have had to wait much much longer-- I am so sorry) and as the day creeps closer, I find it difficult not to catastrophize and add to all my worries like:
“What if the first neurologist didn’t know what to look for since he wasn’t a specialist and I DID have lesions in my first MRI?”
“What if this new MRI is normal and I am that 5% that show a normal MRI but still could have MS? Do I know enough about this condition to trust the doctor if he says I don’t have MS?”
“What if it isn’t MS but something else like a tumor or cancer? Or something I have never even heard of!? Am I in the best hands? Would the doctor know to look out for this possibility?”
“What if this time around I do get diagnosed with MS? What will I do? How will I survive? Can I handle this news?”
“If not this, then what is happening to my body?”
I know no one can truly answer these questions. A lot of it comes from my anxiety and my inability to stay in the present. I am reaching out because I am desperate for kindness and understanding.
I feel tired and defeated. I live in a foreign country for work and although I have my husband, I am far away from the rest of my family. It would be very difficult if not near impossible to go visit home with the Corona Virus pandemic. Mental health services are limited where I am since I do not speak the country’s native language. Every day I cry and feel the fear cycle repeat again and again. I am 24 years old and I feel I have barely lived my life (newly married, first time living away from my parents, first time having a real job, renting a tiny apartment). I know it must be so unfair to read all this, but I can’t help but feel like it’s the end of the world. I am grasping for any kind of reassurance, hope, and human kindness I can receive because this is the hardest thing I have ever been through and it feels really devastating.
I am sorry this is so long. Thank you if you have read this far and are willing to reply.
Ishereenb, I can do nothing to alleviate your anxiety but please try not to worry, I don’t mean to be trite but as you know, worry does not help.
You have an MRI booked for this month so hopefully the findings will relieve you. You will have an expert looking at the results so I really think you need to try to accept the findings. You may, or may not have MS, but worry will only make you feel worse, not better & other tests may need to be done to reach a diagnoses.
It most certainly is difficult being away from your parents, could you lean on your husband to help you through this horrible time? You could keep in touch with this forum, there’s always somebody about to empathise with you…
Oh my poor little lass! At 24 you should be enjoying life with your hubby and not getting into this state.
Yes, if your radiologist and neuro see anything they even suspect is a tumour, theyll deal with it immediately....thats your worst fear…
now if it does turn out to be MS,.it isnt the end of the world! Hundreds of thousands of people live with MS day in and day out.
I am one of those people. I`ve had it for 22 years. I still enjoy life…okay I am limited with being in a wheelchair…but I love to listen to music, sing, laugh, chat, watch films, sew all sorts of things.
What sort of work do you do? With good support you will cope…we often fear the unknown more than the known.
Please give yourself a breather and find something to do that fills your mind with something else.
Have you tried meditation or mindfullness? These things can be self taught. Look them up on line.
You WILL be ok…if you give yourself a minute to rationalise. I promise.
I absolutely feel your pain, Been told I have anxiety for the past 5 years which isnt far from the truth but the underlying reason I have this anxiety. I’m awaiting cbt, and an mri that I’ve had to pay privately as the wait it too long. I google 24/7, read different stories, read up on everything as it has consumed me due to pain reminders that prompt me to do so. Are you receiving any cbt or counselling? You’ve put the ball in motion for your test to potentially find out, it may not give you answers. But the main thing is your mental health, get help with your thought process from the end result and worse case outcome. Will help you to break things down. In the mean time try to keep busy with other things, I really do feel you, A
I remember the limbo stage well, four years ago I too like you had ON which came out of the blue, I hadn’t specifically had neurological symptoms before, or so I thought, although I was always very tired. I found it all very stressful, waiting for appointments, appointments getting lost and just not knowing what had caused it. My worries were a little different to yours initially, I remember thinking omg what if I go completely blind I won’t be able to drive, I’ll lose my job, I’ll lose my house etc. My parents and friends all said don’t worry that won’t happen, but I was like … hang on … how do you know? Anyhow my sight is now back 99%, as in been able to read things with both eyes , it came back within a few weeks, although my colour vision took a year and it isnt what it was, but it is so much better than when I had the episode. The episode was in jun 19, I had my mri in aug 19 and the ophthalmologist read the mri report to me, as soon as he said white matter lesions, ovoid in shape I felt sick as I knew this was pointing to ms. It wasn’t until sept 17 following enhanced lesions on another scan and positive LP that I was diagnosed with active ms. It wasn’t until this point that I actual started posting on this forum. So for 18 months I’d worried by myself, literally, as I think my friends thought I was been a drama queen and it would all be alright. Maybe I’m been unfair here and they were probably trying to reassure me and what can they really say. So, from just reading your one post above I would say, your first mri is clear - that’s seems like good news to me, I’m assuming when the neuro says normal, that you had signs on the mri for having had ON but no other lesions- or did he mean completely clear as it were - even better. I have read that some people have no lesions in the brain but spinal cord and have ms- but I am under the impression they would present with bladder or mobility issues. Secondly, you are seeing a specialist ms neuro and having a second mri - so you are been kept under surveillance. They can only diagnose on a certain criteria so you, as I was, as so many people on here have been and plenty more to come will be in limbo until then. I remember reading that ON although strongly associated with ms does not always lead to ms , I seem to remember it’s less than 50% of people and over a long time. I think the important thing is all the appropriate tests are been done. It is most definitely not the end of the world. As others have said it is the fear of things. I still have fears of what may come, I think that is only to be a human, but I most definitely enjoy my time. I think it’s about trying to rationalise things and work out what you can do and move on. Talking about fears I came on the forum to read the latest on the corona flu - which is a case in point - Some things are outside of our control. Best wishes.
I apologize for taking so long to reply. Every time I came here to look at responses, I would feel dizzy and the beginnings of a panic attack would start to stir up (not because of the responses, but because of the stress of remembering my situation). I could not bring myself to type up a single reply because I felt frozen in place with fog in my brain. Truly my anxiety has made the whole situation worse. Like Rosina said, worrying has not made this situation any better at all. I started to become sick with anxiety and was experiencing many types of symptoms that of course did not help my fears. But I am truly grateful for every single reply here and for your kindness and empathy. It has been more humanizing and grounding during a time where I felt people in my life thought I was just overreacting and who could not relate to what I was experiencing. So thank you sincerely from the bottom of my heart.
I had my MRI on March 31st. My MRI came back negative for MS. The specialist said although there is still a possibility of developing it in the next five years, the probability is very small and unlikely since both my previous MRI and now this one have been cleared. My blood test also ruled out NMO. That was a HUGE relief of course. I feel I have been able to breathe easier (although I still have the symptoms that worried me about MS in the first place). The specialist believes there is a problem directly with my eyes and also the medication I am taking (two separate problems for now it seems). I was referred to an neuro-ophthalmologist who I will see once the corona virus is less of a threat (which may be quite a while from now) and I will also see my psychiatrist because now what is left is to suspect that my medication is giving me rare/unusual side effects. Although I have not figured out what exactly has been causing my neurological symptoms, I am one step closer to figuring it out.
Throughout my frantic searching for validation and reassurance, my Dr. Googling, my fears…the one thing that has kept me afloat was the thought that even if I was diagnosed with MS, I would at least be blessed with an empathetic, compassionate community who would take me seriously and provide not only hope, but understanding. Although I have not been officially diagnosed, I have now become so much more aware of MS and those who brave through it every day. I feel like such a coward-- of course no one wants to be given a difficult diagnosis, but in my searching for community online, just seeing how many people are thriving and pushing through even the most difficult of moments has humbled me. I know it is easy for me to say since my MRI came back negative, but I’ve learned that my worst enemy has been myself-- my fear of diagnosis more so than the diagnosis itself. I am going to use this experience and knowledge to bring more awareness to those around me and support MS communities in whatever way I can. I am not completely out of the water yet, but the MS community does have a special place in my heart. I wish you all the best on your journeys and thank you again.
If I have any health updates that may help someone else on their journey to diagnosis, I will post it here!
You are absolutely right. Worrying has only made my situation worse and has been making me sick in different ways. I have been leaning on my husband during this time, but sadly I am afraid I have been tiring him out. It has been my anxiety that has made it difficult for him because I constantly seek him for reassurance which hasn’t been very fair. He has been a lot better since my MRI.
And of course this community has proven to be the most helpful in finding comfort and understanding!
This post helped me feel more reassured about the diagnoses of a tumor…I kept asking my husband “What if it’s a tumor? Will the doctor know? Will he look out for that?” but I kept thinking back to this comment and you are absolutely right.
I had not been the best at mindfulness so this was a good reminder of just how powerful the brain can be. Meditation and taking the time to breathe and manage my anxiety helped with the final week before my MRI! Thank you for your positive reminder
I am sorry you are also going through this struggle. I honestly wish I could do CBT here but I live in a country where I do not speak the native language (and English speaking therapists would be in the big city 2 hours away if there are any) so it would be difficult to do so. I do recommend it if it is possible for you because I know I wish it for me. Keeping busy with other things has definitely helped. I hope you have been doing better. I will keep track on your post. Wishing you the best on your diagnosis!
Honestly the waiting in between appointments and having to face my own fears and anxieties in the meantime have been the worst part. In some ways I do now have that legitimate concern of going blind since the doctor suspects the problem is now directly with my eyes, but I am trying not to go down that route and spiral. My vision returned about 99 percent as well. Sometimes when I look to the right I see a residual flashing sensation (for lack of a better way of describing it) which clearly has resulted from some permanent nerve damage. I am quite sad about that but I am blessed that I can see just fine for now. I really hope whatever my problem is doesn’t devastate my vision…I won’t be able to see the neuro opthamologist any time soon but the doctor told me since my visual acuity has not been suddenly decreasing, that it isn’t “urgent” to go immediately during the corona virus risk.
I think those last few sentences especially hit home. You are right about fear being a human thing. I have still not learned how to fully manage my anxiety but reaching out to people who understand my situation and who know what I am going through has helped a lot. Coming to accept that some things are outside of our control truly is something I need to remember. Thank you for sharing your experience!