Strange symptoms

New diagnosis and before diagnosis
1

Hi there,

I am not diagnosed with MS as it stands but have been experiencing a weird cluster of symptoms and would like some advice or thoughts around them, whether it sounds like ms or not?

Starting in Jan 2020 I was having random electric shock like pains in the left side of my face that would be sporadic and come out of nowhere. I had recently had dental work done so just thought it was something to do with that. However for the following half year I would have periods ( a number of weeks or a month) where the pain would come and other periods where I wouldnt feel it at all. After this going on and off for a while I went to the doctors to talk about it, at this point the pain in my face had come back but also a tightness/pain in my chest area. They said they didnt think the two would be related and I was sent for an MRI to look for Trigeminal neuralgia caused by a misplaced blood vessel. Resutls showed there was no misplaced blood vessel but they did find a “Cystic structure” on my hypoglossal nerve. Either way nothing explained why i was feeling this pain.

The months following my scan my pain went away and came back in the same fashion as usual in periods of a few weeks. However, along with the facial pain and chest tightness I was experience dull aches on my right arm and most recently I’ve been having periods of ringing in my ears (chnges between both ears). I have re-contacted my GP about these new symptoms but they are still unsure and say it definitely doesnt sound like “classical” MS after I voiced concerns about the possibility of MS.

I’m jsut really confused and worried about whats causing these symptoms. When the pain comes it is so intense and distracting (not the best as I am a student trying to study for exams at the moment) and the not knowing whats happening is really upsetting if i’m honest.

Does anyone have a similar experience with such an odd cluster of symptoms?

2

Hi Euan

Don’t suggest MS to your GP, instead say that it may be something neurological because neuralgia definitely IS neurological.

I have had neuralgia when I was 22, (I’m 63 now). Horrible pain, to distract myself I lay on the carpet with headphones on listening to heavy metal and blinking to make strobe light effects!

GPs don’t admit to knowing MS (rightly) but it’s up to the patient to explain their problem.

Do have a word with your tutors. They may be able to help.

Take care

Carole x

3

Thanks carole, will definitley give that a go, heavy metal music is right up my street anyway!

Best,

Euan

4

Hi, I get the head pains, and have done on and off for 16 years. When they first came I had other symptoms too which meant I had to stay in hospital for observation and came out with my diagnosis. I still get the head pains in clusters, like you and stress can be a trigger. My pain came like a lightning strike and was gone in around 20 seconds. Good luck

5

Hi, I’d say it’s not MS but it could be, I experience bits what said, I get significant pain, fatigue, memory loss, plus lots more but a lumbar puncture is a common test used to diagnose MS, try and push for one if you can, MRI’s don’t pick up everything. I hope you don’t have MS or anything serious. Good luck😊

6

I think you really need to be diagnosed…the chest tightness could be what we refer to as the MS Hug. It’s very frustrating not knowing!