Brain lesions and strange episodes!

[Princesslucky1]

Sorry I know this belongs in health but not much traffic going on there.
So for past 2 years I’ve had weird tingling now and again went to gp and bloods fine.
3 weeks before Christmas strange episodes started with weakness through my arms and legs and then what felt like a 2 second shock or contraction to the brain. I was left exhausted after these and very tingly in arms, legs, luis and tongue.
I ended up going to A+e after a few more episodes where they did brain scan and they admitted me straight away saying inflammation and strange activity on brain.
The neurologist came around next day and ordered mri on spine and lumber puncture and both were clear. They also did some neurological physical tests which were also fine.
The neurologist said he didn’t know the cause and put me on gabapentin to help pains and says they will do Mri every 6 months for 5 years.
That’s ok if I wasn’t going through absolute hell most days since I left hosp I’ve stabbing pains in my face, Weakness in limbs and pains and loads of weird sensations. Somedays I find it hard to walk and I’ve young kids that are suffering because of my bad health.
I’m not really frightened of all the pain but I’m terrified of the actual episode where it feels like a flash or mini brain attack or a contraction to the brain.. has anyone any idea what I’m talking about? I can’t explain it very well but that happens every 3-4 days and it’s really awful.
My husband has emailed and called neurologist so they have scheduled a urgent appointment on Thursday

I don't have all your symptoms but I have had - numerous times - the electric shock to the brain. Usually when I am half asleep and there is a noise. It's quite harmless - I looked it up and spoke to the doctor about it. That said you have a lot of other symptoms so I don't know how that is related.

The electric shock thing can also be a symptom of coming off antidepressants.

Thanks no never on antidepressants. I don’t know how to describe it. Like someone came up behind you and gave a massive fright maybe.

Surely it's likely to be caused by the brain inflammation? So they need to tell you what they think is causing that. Ask for your GP to refer you for a second opinion if you're not getting anywhere.

Have they investigated you for TIA? Pretty sure they would have. My husband had similar symptoms and it was TIA which showed up on MRI. He's now on blood thinners.

I asked about TiA but they said I’ve no risk factors! My doctor referred me for that carotid ultrasound scan and that was clear. I’ve also had a lot of heart palpitations but they did ct angiogram and that was clear but I have developed a eptopic beat which they think could be caused by stress of the situation

The brain inflammation they said is 4 liaisons on brain. They don’t know cause yet. They said migraines or b12 but I don’t suffer from either. They are doing scans every 6 months to see do I get more.

Yes my husband was admitted to a stroke ward via A+E, about 12hrs after developing tingling on one side. It was only the MRI that showed up this little infarction. He has high blood pressure though so he was at risk for stroke, though he's young. I hope you get more answers with your next appointment

You say lesions in the title of your post OP. Did any brain lesions show up on the MRI?

Yes sorry 4 showed up on scan.

Sorry I’ve lots of typos new phone

I'm clearly no medical expert BUT I don't think deficiencies or migraines cause lesions?! Lesions are things like scarring; benign tumours etc. You definitely need a re-review of your brain scan in my opinion. Hope you feel better soon

My husband had similar symptoms to you over the summer. His MRI showed several lesions on the brain and one at the top of his spine. He is currently awaiting a formal diagnosis of MS. His episode lasted approx 2 months and he has not had another episode since. He feels extremely well at the moment and the only symptom he gets currently is occasional numbness on his tongue.
Have the hospital offered to refer you to a specialist neurologist?

Sorry, I also meant to say that it’s advisable you start on a large dose of Vitamin D3 as soon as possible. My husband was advised to do this before they did further investigations into MS.

Hi ThePinkWig I’m under a neurologist but not sure how specialised he is. There was word about ms but then lumber puncture was clear, did your husband have one? All the symptoms do point to some neurological condition but the sudden episode is what’s worrying me I’m not sure that is a ms symptom? All the other symptoms come and go all day. Tongue tingling along with bottom lip and chin goes numb. I’m glad your husband is doing well

Yes I’m on prescription vitamin d

Hi 🙂 He hasn’t had a lumber puncture yet - I think that will be the next step. Initially he was referred to a generic neurologist but then referred by him to a specialist MS neurologist. He hasn’t seen that consultant yet though, as still waiting for the appointment to come through. So far he has had two MRIs and the usual physical tests, which were generally ok. His blood-work also came back clear.
I do understands what you are saying about the episode being sudden. My husband had just turned 40 when he developed very sudden and very painful symptoms. We had absolutely no idea what it was and thought for a long time it was a trapped nerve. When he finally saw the GP she insisted on further investigations and it went from there. According to the neurologist it is very unusual to develop first symptoms of MS at 40 - it usually manifests in the teens and 20s.
Honestly when MS was first mentioned you could have knocked me down with a feather.

Gosh, OP. How scary for you.

Your face pain sounds very much like Trigeminal Neuralgia, but that wouldn't account for the limb numbness and other pain.

Hope you get some answers very soon.

Have you looked at the website for multiple sclerosis?

Thanks everyone for the replies. Yes I think the face pain is a type of neuralgia was full sure was teeth but nothing wrong with teeth.
The pink wig it’s mad how things just start. Now I think I’ve had a milder version of this for prob 3-4 years but defo not then sudden episodes.
Yes I’ve looked up ms websites I certainly have a lot of the symptoms but I’m confused with the other tests that were clear.
I’m really frightened it’s tia and any day I will have a full blown stroke. This mind sound odd but if they find it’s ms it will actually be a relief because at the moment I’ve a intense fear I will just drop down any moment. Awful way to be

The facial pain sounds like trigeminal neuralgia which can be a first symptom of MS. Themes would fit with lesions and twitching and pins and needles. What did the lumbar puncture show? If you have MS it would be positive for oligoclonal bands.

The symptoms not *themes

Although you can be diagnosed with a clear LP which i have just read that you got. The best thing you can do is push for a specialist MS neurologist appt. Also mine started in my 40s. It is uncommon but not out of the question.

My father had these symptoms with ms. The ‘lesions’ were actually scarring on his brain from it. Have they ruled out ms?

Hi no they haven’t fully ruled out ms that’s why they will do scans every 6 months to check and see if there is changes. I’m not sure what happens in a few months if there is changes.
I would like another mri now as I feel them weird episodes are possibly a change but is that even medically possible I don’t know.
I’d also like tia fully ruled out but again not sure how they do that. I wouldn’t mind waiting if I wasn’t in such pain but everyday is a struggle.
My husband sent a email to neurologist stating everything so I’ve a appointment tomorrow I’m going to try and push for another Mri with contrast this time but not sure if he will order one.