I have read a few posts here and finally bit the bullet and joined. I was referred to the opthalmologist due to vision problems. As this turned out to be a repeat case of optic neuritis, I was sent for an MRI querying MS. I have just been for the results, which showed brain lesions. From looking, it appears that this could be a factor used in diagnosing MS, but I have to wait and see a neurologist for my first appointment in October.
Upon reading about MS I realised that I also have quite a few other symptoms, namely pins and needles alot of the time, joint and muscle aches and pains, headaches, stumbling over my words and even becoming more clumsy.
The point of my post is what was the next step for diagnosis? I am currently in a waiting game, trying to second guess what will happen next since it was the opthalmologist who gave me my results and didn’t explain the next steps as he isn’t a neurologist. I know you won’t be able to tell me if I do/don’t have MS, but being prepared for the next steps/tests I may need to go through will definitely set my mind at ease!
If you have reached this point, thanks for reading
The most important thing I can tell you is to write a diary. Think back as far as you can and try to put rough dates on everything you think might be related.
What will happen at the neurology appointment is that the doctor will go through your history. S/he will ask about your past medical history as well as family history. S/he will ask about what has brought you to this point, what symptoms you have that seem related and what has happened thus far. In particular, they may ask you how long symptoms have lasted and whether they have completely or partially recovered to your ‘normal’.
They should then give you a physical examination; things like reflexes, pin pricks on your feet and lower legs, tests on what they call ‘proprioception’ (sense of feeling in your limbs, typically things like bending your big toes when your eyes are shut). Also following what your eyes do when you are looking in different directions. (Plus various other tests.)
At this point, the neurologist will have some idea whether there is a neurological problem. They may also have an idea what that problem is. Note that they won’t be starting out with trying to rule certain diagnoses (ie MS) in or out, they’ll be starting from scratch.
This is the time when the neuro will either say there doesn’t appear to be a neurological problem, or that further tests are required. Primary among these will be MRI scan(s). In ‘normal’ times, a lumbar puncture might be done. But in a Covid world, this might not be done.
It is a case of wait and see what the neurologist does and says. At that point, if you have further questions, feel free to ask us.
Agree you’ll most likely be sent for a lumbar puncture next and possible visual evoke potential tests (VEP) as your symptoms are largely to do with your vision. These should confirm the diagnosis if indeed it is ms you’re dealing with. In the meantime if you wanted to be doing something - I know it helped me to be feeling proactive in times of waiting - then you could start looking into the DMDs available. I’m recently diagnosed and it’s certainly helped me to have done my research so that I can follow the conversation and give my opinion when discussing next steps in terms of treatment.
Hopefully it’ll be research you never need to draw upon but just an idea if you were wanting to read up and needed a place to start.
Thank you for your replies. I was really hoping that I wouldn’t need to go down the lumbar puncture route, but I guess I need to prepare for it! I just have this weird fear over it. They have said to prepare to be at the hospital for up to 3 hours, so guessing some of these procedures may take place the same day. It is nice to hear some of the less invasive diagnostic tools I may face, so thanks again for that.
Being completely honest, I have had some of the symptoms seen online for years, I just didn’t realise that they were symptoms of anything! For me, they were just normal.
I’m finding the wait worse than anything right now. My brain is flicking between relief if I get a diagnosis, and worry about the prognosis if I do. I think that right now, that is worse than any symptom that I face.
Hello. My first symptom was optic neuritis as well. My diagnosis was pre covid . Diagnosis took 18 months and in that time I had repeat mri with contrast as my first mri was without and lumber puncture, plus heaps of blood tests. Not sure if you will require this as it also seems to depend on your consultant. Good luck
Thanks, it is D-Day on Monday and I am hopiing beyond all hope that I don’t need to go for a LP. I’ve already had the contrast thankfully, so hopefully won’t need another MRI. As the lesions that show are new (weren’t present on my last MRI 4 years ago) I am hoping that they will be a good diagnostic tool (either for/against MS) and it will be enough. I doubt I will be that lucky though!
Good luck for Monday. As you’ve already had an MRI, the neurologist may be able to make some decisions without needing an LP. If will depend on your physical examination, your history and whether the lesions seen on your MRI were demyelinating or not, also if they can tell whether they are old or new.
Try not to worry about LP. Just in case though, take some full strength coke with you and a bendy straw. If they do an LP there and then (unusual, but you’ve been told you may be there for some time), you should make sure you lay down for as long as the hospital will let you after the test. Also, drinking fat coke helps ward off a nasty headache which can be a side effect of LP. It’s the caffeine plus the sugar than helps.
Thank you everyone! I have just come out, and based on my MRI the registrar was already pretty convinced it was MS. He showed the MRI on the screen and there were 3 distinct lesions in the white matter, one of them rather large in my communication processing centre. He said that the physical exma backed up the MRI so he is sending me a results letter saying ‘probably MS’. He has ordered a few blood tests and is sending the details of the MS nurse etc, but no LP even mentioned let alone ordered (thank god). He says he thinks it is remitting relapsing, and is waiting on bloods and confirmation from the consultant in order to be certain no treatment is required at the moment. Overall, a really positive appointment despite the diagnosis, but at least I finally have an explanation!
