Awaiting diagnosis - MS and migraines
Hi! I'm on an "urgent" waiting list to see a neurologist after a recent concerning MRI scan which was a follow up, showing an additional legion of hyperintensity which could be demyelination according to my new GP. My symptoms were dismissed before several times by GPs as being just anxiety, or due to my long history with migraine, or just "we don't know". Symptoms dismissed as a panic attack include almost passing out, slurring speech and being unable to walk or grasp objects, numbness and tingling of both my hands, and my lips, daily aura and vision problems, headache, fatigue.
Yes all these things could potentially be a form of migraine, too. I've suffered with migraine with aura since I was a teenager, they come in clusters and the last few clusters have had these brand new symptoms mentioned above, not occurring at the same time as the migraine but within the same cluster time frame of a few weeks. I'm really confused over whether it's migraine which is getting worse or could be something more such as MS, and whether anyone else here suffers with both and could tell me the difference? I've basically been gaslit so much and used to just working through the pain that I don't know any more.
I do know that people with MS have a higher chance of also having migraine co-occuring. Any thoughts?
I'm in South Australia.
Hi
just wanted to follow up and see if you were able to see a neurologist or at least have an appointment coming up soon (I hope). You have been through a lot, I really hope you can get the health care you deserve. Unfortunately so many of our members say their symptoms were dismissed, it is really discouraging. I am sending over this article from one of our members with her experience with migraines: https://multiplesclerosis.net/living-with-ms/migraines. I hope this is helpful to read. Please keep us posted with how you are doing. Jill (Team Member) Thank you for kind words of support, I had a read of the link and it very much sounds like me. I called the hospital and the triage process can take a few weeks so I don't know how long I'll have to wait yet.
At first I hoped not to get a diagnosis but now I'm worrying about what will happen if they don't have any diagnosis and say they don't know, or it's just migraine, and then I'm stuck not knowing what's up with me or being helped. Very confusing time this waiting around I'm hoping for answers soon.I am so glad you have called for an appointment. I really hope you don't have to wait long. You could check and see if they have a cancellation list that you could be put on. I am sure this is very confusing and overwhelming for you. Sending you so much strength during this difficult waiting period. I really hope you will have an answer soon. Please keep us posted. Jill (Team Member)
I finally have my initial neurology appointment coming up next Friday hooray! (I had to go to a very expensive private place to get in) What are some questions I should ask to make the most of the appointment, and what should I expect?
My worst fear about it is that they won't know what's going on, no diagnosis (of anything) and therefore no treatment or answers.I am so glad you reached out. Here are some articles that I hope can help with your appointment: https://multiplesclerosis.net/living-with-ms/tips-patient-doctor-communication, https://multiplesclerosis.net/living-with-ms/preparing-for-your-neurologist-appointment and https://multiplesclerosis.net/diagnosis/medical-history. Jill (Team Member)
Update. I still only have a diagnosis of migraine but my neurologist is getting me to take MRI brain scans every 6 months, the last scan showed a new area of damage, he said it still could be migraine but it's now "borderline" and to wait another 6 months for an MRI to see if anything else has changed. It seems to be pretty typical to have to watch and wait as damage happens over time, but since this journey I've also been diagnosed with hypermobile Elhers Danlos syndrome and adenomyosis, have lost over 10kgs of weight in the last 6 months I'm now 54kgs. I'm now waiting for a (private again, waiting lists) gastroenterologist to tell me what's going on with my poor digestion and extreme reflux. I've reached the point with my fatigue, lightheadedness and brain fog that I've stopped being able to "think positive" and "work through it" and I'm now entirely fed up of all the waiting while feeling like crap, working, being a mum and looking after a house which isn't as tidy as it used to be.
I'm wondering now whether these things are all linked and whether my GERD symptoms could be MS or hEDs or blurred together, both, or, neither.
Diagnosed:
ASD
GERD (worsening with time, on all the medications.)
hEDS (new)
Migraine
Adenomyosis (new) and endometriosis
Not diagnosed:
MS?, this is a lot to deal with. You are right that a watch-and-wait approach is a common route. However, having to now deal with all of these additional diagnoses, I can imagine, is overwhelming. I am sure you are fed up with all the waiting while feeling awful while multitasking the various roles in your life. I really hope you can see the gastroenterologist soon. Do they have a cancellation list that you can get on? We are wishing you all the best. Please keep us posted. Jill (Team Member)
