Some advice on symptoms please-very confused!!

Hi, I hope someone can help as I am confused as to what is happening to me.

It started over 4 weeks ago with an agonising sore head and eyes, however the tip of my nose and lip area were numb. Also if I touched my face or scalp it seemed to set of a feeling of something crawling on my face or hair.

Initially I was referred to neuro and had a brain MRI, this showed several ‘abnormal patches of inflammation’. This neuro stated that this is likely what was causing my head pain. A 2nd spinal MRI was ordered and I was also referred to a new neuro who specialises in inflamed conditions.( The original neuro also advised that I may need to have LP). My first appointment with the 2nd neuro confirmed my spine was clear. He suggested that I may have 2 separate issues as the inflammation wouldnt cause head pain.

The first of the issues was the (still there) 4 week headache, which he said could be Migrainous and advised to come off any pain relief and see if this is causing rebound pain. I am currently doing this and the headache and eye pain is milder but still there. I have had what I thought was a migraine over 10 years ago when my right arm went numb and my peripheral vision went for few hours but no headache.

The other issue is the brain inflammation, which he said, as my spine is clear “it is unlikely you will get any physical symptoms, therefore there is no point in doing further tests”. Does this sound right? he even said if i’d come through NHS I wouldnt have had the scan and therefore would be oblivious to it!! Does this mean that I could develop MS later on in life but have to wait for physical symptoms?? Surely the inflammation is a symptom of something else and I should try to find out the cause?

Any advice/opinions would be welcome. :slight_smile:

hi cc

wow, you had migraine without headache! i had that once about 15 years ago. people didnt believe me when i said it was migraine because i wasnt in agony

has the neuro discharged you?

the numb lips and chin sound like bells palsy. you should take a vit B complex supplement.

have you any other ongoing symptoms?

carole x

Hi Carole,

Sorry my email was not clear…so much to fit in!

The headache has been sore for over 4 weeks and is still sore. Only physical symptoms other than headache and numbness/tingling and sore eyes is fatigue. I have no signs of weakness in limbs etc.

I go back to neuro on tues and if my symptoms have improved in this week without pain relief he wants to diagnose migraine and discharge me. No investigation into the brain inflammation despite saying its separate from the migraine

Does that sound right?

thank You!!

the previous non headache migraine was undiagnosed as i didnt go to DR. my father had similar symptoms when he had migraine eg numbness on arm and loss of peropheral vision but he did have the headache. I always just assumed it had been a migraine :slight_smile:

Hello and welcome :slight_smile: I’m hoping that you might have misunderstood the neuro because the comment about spinal lesions makes very little sense. And this is a neuro who specialises in inflammatory conditions? Your previous episode is definitely more consistent with migraine than MS as far as I know (MS doesn’t tend to cause very short-lasting loss of peripheral vision), but this episode is a bit trickier to explain away (is he saying that you are having a month-long migraine or that you have developed a rebound headache within a month, but how would that explain your sensory symptoms?) as are the lesions. Saying that, I’m a bit confused by the neuro telling you that the lesions are unrelated to the migraine (migraine can cause lesions), but not to worry about them. It’s all very well saying that you wouldn’t know about them if you’d come via the NHS, but you didn’t! I think, if I were you, I would ask to see a neuro specialising in headache. It might be that it’s all migraine-related, but I think I’d want an expert to confirm that. Karen x

Hi Karen,

Thank you for your help!

I have just re-read my initial email and realise it was a bit confusing re. MRIs. My initial MRI was on my head and they found several abnormal patches on my brain. Im guessing the neuro said it was unconnected to the month long migraine by the shape or location?? is this possible? My spine MRI was clear so he suggested no further action needed, despite describing the brain patches as abnormal.This neuro does have headaches as one of his specialisms ( im just not sure hes that interested.)

I am seeing him on tuesday, my headache is very faint now so I imagine he will discharge me. I have my scans on disc but havent seen the reports of my MRI to see what the radiographer said.

Should I ask them to investigate further or just wait and see if I have further symptoms later in life. It just seems like quite an important thing to just leave?

Thank you again x

It’s impossible to know what the neuro was thinking for sure, but I would guess that he thinks your lesions are “non specific” and the sort of lesions that are fairly regularly found in healthy patients with no symptoms. The challenge comes from determining if, instead, they are related to your recent headache and sensory symptoms. If he’s a headache specialist, then he should certainly know better than most about what’s going on. Saying that (and being the natural cynic I am), I would imagine that your clinical exam would be a big factor in his decision and so I think that is what I would want to know: are there any abnormalities in my clinical exam that are inconsistent with a diagnosis of migraine/headache? If there are (and even if these are arguably insignificant), I think I would press for more tests, purely as a precaution. If they come back negative, I would be much more able to put this behind me without lingering doubts. Kx

Forgot to say: if I were you, I would want to know how the neuro can tell that the lesions are not related to migraine. (This suggests that they are consistent with something else or that you don’t have migraine, in which case, what caused the sensory symptoms?) Kx