Hi, I have recently just joined the forum to look for some support/advice/info from others who are going through the same.
I went to the doctor about a year ago due to having double vision nearly every night along with extreme tiredness both of which were starting to effect my life.
I have since been for a MRI which showed several small hyperintensities both superatentorially and infratentorially (not sure what this means as wasn’t thinking straight when I got the results as I was expecting the MRI to come back clear so I didn’t ask questions).
and yesterday I had a lumbar puncture (which I am still recovering from - really not a nice procedure).
I also have other symptoms such as -
-aches in my back, legs and hips
-really bad memory/forgetfulness/confusion
-struggle to concentrate
-not great balance /co-ordination/vertigo
-I sometimes get shadowing in one eye
These are just some of the main ones that really impact on things.
My neurologist keeps asking me about symptoms but not sure what’s a symptom and not as I feel like I might be experiencing something but think it’s normal since Ive been experiencing it for so long.
The waiting for appointments, tests and results takes so long and feeling really scared and anxious about a possible MS diagnosis.
I am not due to see my neurologist until April when I will get the results from the lumbar puncture. I also have a couple of appointments coming up to see an eye specialist.
Just wanted to see if anyone has had a similar experience and thinks this could be MS or not and how you cope with being diagnosed… Is it a relief and with support do things get better or does it just open up to more uncertainty and worry.
Hi Anna,
I can relate to the balance and forgetfulness as ive noticed anything after 24 hours i have issues remembering. hopefully its not MS but i was kind of lucky after my 3 mris the doctor said with the amount of lesions both old and new meant i didnt need a lumbar puncture in the end. Just hope the results come back with some news on how to proceed forward.
The forgetfulness is horrible… I have post it notes everywhere and reminders set in my phone to remind me of everything.
Glad you didn’t have to go through a lumbar puncture, it was a really horrible procedure and still struggling with a really sore back and legs, hoping the pain will subside soon tho.
Hi! I can really relate! I’ve been having symptoms on and off since 2020 and I have my first appointment with a neurologist next month. My previous GPs have always focussed on other things like weight, anxiety, ADHD and just other things which literally made no sense what so ever.
The thing that got me onto this path was in March last year I suddenly had a shadow come over my left peripheral vision which triggered multiple tests and appointments with eye specialists and A&E visits. 1 CT Scans, Several OCT scans and 1 MRI (looking for swelling on my brain because apparently being over weight is the only thing that could be causing any symptoms) later my specialist told me that there was a change in my optic nerve and that I needed to see a Neurologist urgently, that was in June 2023 and I finally have my first appointment next month.
This forum is so supportive and It has really helped me. I have a friend with MS and my family heard my symptoms and recommended I talk to her. She’s a great example of living with MS, diagnosed around 26 (same age as me), she’s got 2 boys and runs her own business. She knows her limits and uses mobility aids when she needs to but she also has the best adventures.
It’s okay to feel anxious and scared, I was initially because literally all of my symptoms point to MS but I just have to see what the Neurologist says.
Stay strong! You’ve got this! - P
Hi @anna
My back, legs and hips give me gyp daily, not to mention the fatigue, loss of balance and coordination.
Yes, the lumber puntucture is a good indicator if you have multiple sclerosis, we MSers have a higher content of T-cells in our spinal fluid.
I remember how long a road to diagnosis it was for me: all through the 90s I had no idea it was early symptoms of MS and not growing pains.
Good luck and all the best with your neurology appointment, this April.
JP
Hi JP, Thank you, hopefully will finally get some answers.
Hi, that’s such a long time to wait and for doctors to not be listening or investigating further.
When I first went to my doctor with the double vision they told me it was probably a phase and it would pass…it was my optician that pushed me to go back and tell them I wanted it looked into.
Hopefully now you are seeing a neurologist you will start to get somewhere.
It’s good to hear that people with MS are finding ways to continue with things that they want to do as that has been worrying me that I might get to a point that I’ll have to stop doing certain things that I enjoy.
Thank you for your supportive message, it’s nice to know I’m not alone.
Hi, i dont have much to add as Ive just been diagnosed myself. I feel exactly the same regarding symptoms. I declined the lumbar puncture and reading this post makes me glad. I had a lot of waiting for MRI’s. Just wanted to say hope you get the answers but its also a mix of emotions getting that confirmation too. Id quite happily stick my head in the sand a bit longer but cant now.