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Got dx, not Ms!! Worth a read for all those waiting dx

Hi, has a 2nd opinion appointment today with another consultant. he was so thorough! Appt lasted 1 and a half hours and he went through everything with a fine tune comb. My leg weakness is due to permanent nerve damage from 2 spinal surgeries, i knew that anyway. The otther symptoms, vertigo, tinitus, pins and needles, heat intolerance, confusion etc, are caused by a neurolgical condition, a rare type of migrain! called migrain auras, not the normal symptoms of migrain with headache etc which is caused by restricted blood flow to the brain, but a condition caused by the covering layer of the brain sending brain signals int he wrong direction resulting in physical symptoms such as above but not actual migrain headaches. As far as know I have never had a “migrain” in my life, but I assumed all migrains were sever headaches, light sensativity and nausea, so was surprised to hear about this other type. Looked it up when I got home and wham! there it was, all mt symptoms. S starting medication tonight and hoping to start feeling better within a few weeks worth asking your GPs/neuros about if you still not getting very far with dx. xxxx

Well done, you must be relieved. I got good news today too. I have started my own thread.

Moyna x

Congratulations, you must be so pleased. Hope you start to feel better soon. Linda x

Hi Bunny, I’m glad it isn’t MS. But still a bit confused about your actual diagnosis. I know migraines can do some pretty weird things, but I thought the chief characteristic of migraine with aura was - well, the aura! I’ve had it just once (no idea what triggered it on that occasion, but other family members are regular sufferers). It was a spectacular, even beautiful, visual disturbance - like shimmering water, castles, chess boards. I had absolutely no pain or nausea at all, either before, during or afterwards. I realised it was a migraine, from relatives’ descriptions, so I was expecting to get quite a bad pain - which never came. After the initial shock of getting my first ever one at forty-something, I’d say I actually enjoyed it, once I realised I wasn’t dying, and there was no pain. It was so fascinating I tried to cause another one on purpose, but it’s never happened again. I do know that on the day it happened, I’d been working hard, had very little to eat, and then consumed a lot of wine and strong coffee. Then a delivery driver called, and had parked-up outside, with his lights on. I gazed into the headlamps, and when I went back inside, the after-image, instead of fading, just got bigger and bigger, and more complicated, until it covered my whole vision. It lasted about 15 minutes. I’m sure there must have been other times I’ve drunk wine and coffee on an empty stomach, and looked at bright lights, but never with the same results. It must have been just some fluke combination. I thought it might be the start of a whole series of them, but I’m guessing it has to be over ten years ago now, but it never happened again. I never got the other symptoms you got with it. I did go on to get MS, unfortunately, but I don’t think the two were linked. In fact, I don’t think I even mentined it to the neuro. A single migraine, years before, wasn’t really uppermost on my mind. Tina x

So glad you now know what is happening to you.

S x

That is very good news indeed! I am glad that your second opinion was so productive.

I hope that all goes well for you.

Alison

Thanks all, Tina , I haven’t experienced anything like youi did. My visual disturbances are simply solid objects seeming to wobble and wave (a bit like looking through a heatwave) or the ground seeminly moving in an out, likes it breathing. My worse symptoms have been confusoin, pins and needles in the face/eyes/top of head, leg and arm weakness on the left and speech problems, apparantly this is “an aura that causes transient speech or language problems referred to as dysphasic aura. In the rarest of auras, the limbs and possibly the face on one side of your body might become weak; this is referred to as hemiplegic migraine”. - this is apparantly what i suffer from, have to say I have never heard of any different types of migraine before, all a bit new to me. Mine is an ongoing and (at the moment) permanent Aura that is happening but should ease off with meds. I have been prescribed Pizotifen tablets, low dose for 21 days then increasing after that. The migraine trust website has a lot of info about various types of migraine. For me, the neuro thinks one of the main triggers has been menopuase and stress related to chronic back pain. I guess all these ilnesses are different for everyone, what we think is “normal” for a condition may not be the same for everyone. xx

Great news!

I’m sure medication will be a great success…

Pat x

So glad you have an answer Bunny! I hope the medication works for you :slight_smile: Xxx

Well…wow! So now you know what is wrong, you can feel more able to deal with it, eh?

I knew practically zilch about migraines, so it was interesting to read about your type.

I do hope the meds calm it down and you can get back to some sport of normality…whatever that is!

luv Pollx

I have hemiplegic migraines. Been taking high doses of amytryptilline for years. Mine are always accompanied by crippling headache and vomiting though. They put my first episode down to migraine. Are you having any improvement? X

Hi Littlekit, no I don’t have typical migraine headaches or vomiting. mine is described as Aura without headache. Think I have had a lucky escape on that score, the other symptoms are bad enough without crippling headaches on top. Not noticing ant difference with meds as yet but only started them on monday and apparantly will take weeks to work. looking forward to when they do though xx

Hope they work! They are considering changing my meds. Yeah it’s horrendous having the headaches and vomiting on top. They knock me off for about 3 days and then the aura lasts for up to 2 weeks. Now I have injections to use at the start of the migraine to stop it in its tracks :slight_smile: x