Forum

Worried it's all in my head

Hi,

I like many others have loitered on this site for a LONG time. I’m not sure i’ve ever posted, but here goes. In summer 2007 I started to get the most almighty migrain ever but it wasn’t typical of my usual migrains, it was behind my eyes and so painful I wore sunglasses till night even the living room light drove me mad. It got so bad i was admitted to hospital with posible meningitis, I was discharged 4 days later told it was a virus and i’d be fine. By the end of that week i had slurred speach and problems balancing which at the start were so bad, I was accused of being drunk (by an old lady) while i walked my kids to school. It seemed to last for about 3 weeks then started to improve, but i was left with balance problems, not so that people would particularly notice but enough for me to have to sit to slip shoes on or get dressed. I had a neuro appointment and was told he thought it was MS. I had an MRI and evoked potentials and didn’t see another neuro for 6 months to get the results apparently he likes his holidays. He may as well have stayed on his holiday, when i saw him he said “It’s stress” and waited for us to leave, when we asked what could be causing it he said “do you want it to be something serious” sarcasticly.

After this I vowed i wouldn’t go back again, to feel humiliated that way again. So when i started to get more symptoms i ignored them even when everyone else can see, I feel like a fraud and that all of my symptoms are in my head. More so when on a day to day basis I can feel so different, some days are terrible and I’m so tired I take the kids to school then sleep all day till I fetch them again, I cant walk properly cause my leg feels like it’s not mine and it gets tighter and tighter the more i push to walk. I’m frightend to drive now cause I know I cant see properly, and no amount of glasses are going to fix the fact that if it’s moving I cant track it with my eye’s. I’ve been dragged kicking and screaming back to the doctor who again said “stress”, but my mum pushed for a neuro appointment and i went last week. It was strange because, I was releved that when he did the exam he picked up on things, I’d blown off, as they got better, like right arm weakness, the eyes thing and the numbness in my face. Now I dont want to go back, he was brilliant, I had blood tests and he’s booked me in for an MRI and the longest he was willing to leave it without seeing me again was 2 months. But and it’s a big but, what if there’s nothing there again, I know in my heart that the episode in 2007 was the first time, I know i can’t go on like this, but weirdly I’m more scared that it isn’t MS and I’m going nuts than the DX. It’s not normal for a 33 year old to have to take turns out of dances (I line dance, it’s what i can manage) and sit down for a while after a dance, when an 82 year old spins like a top and dances every dance that evening. It’s not normal to think your pressing the clutch down in the car and hearing the gears crunch because no matter how hard you try that leg aint moving. It’s not right that I’m so exhausted after just walking to the school that I need a nap. For god sake I’m 33!!! Today I took the shame and used my father-in-laws old mobility scooter to go to the school, I felt better for it but so embarressed cause everyone looks cause of my age i suppose, although physically it made me feel better, emotionally I want to crawl up a corner and die. I feel like I’m losing myself, every day a little bit more of my soul gets chipped away, when i cant do something or someone mentions something, I have always been independant and strong and now, I suppose for the first time I’m scared.

Joanne xxx

Hi Joanne, oh hun, how can I help you?

Yes, of course a 33 year old should be able to go about their daily routine, go out for fun times, take the kids to school, drive the car, without problems. I understand why not being able to do these things without a problem, is worrying and annoying you.

Youve now got yourself a good neuro...........he sounds to be more on the ball than the previous guy, so do keep appointments and let him treat you and find a diagnosis, if thats what happens.

Just because the first doc found nothing, this new one might. Even if he cant come up with a definite diagnosis, he`ll record your symptoms and with follow ups, he may be able to build up a picture and fathom what is going on.

You know I`ve seen 15 neuros and been diagnosed with PPMS, which was changed to HSP and back again full circle.

I`ve been up and down, so down that I wondered what was the point of seeing docs. But I still go and want them to see how I am.

You keep those appointments too, hun and even if you do find yourself with a diagnosis of MS, life will still go on. Your kids will need looking after, the housework will still need doing…if you are offered help, then take it. You could also get help from carers, if you need them.

I know you feel scared.that`s perfectly normal hun.

Hang in there, yeh?

luv POllx

Hi,

Thank you for your kind words, it means a lot to me, my out look is a little different today, i had an attitude adjustment via a bottle of bacardi and I have come to realise 2 things firstly my tolerance for alchol is not what it used to be and I feel terrible this morning (serves me right to) and secondly there are no answers in the bottom of a bottle, what ever will be, will be.

I hadn’t seen my doctor for 4 years cause I kept thinking it’s me. In that time the right side of my face went numb and my eye lid dropped. I have muscle spasms in my legs, arms and torso (I feel like i have snakes under my skin), I have loss of sensation in my right arm (like wearing rubber gloves) and muscle weakness, the same now with my left leg (makes stairs a nightmare). I have vertigo and balance issues my latest as in the last few days, I cant put my finger on it but it’s something with my vision, I had double vision for about 3 days and now thats corrected itself but my right eye waters and things dont look the same. If i see something move its just a blur untill it’s still again weird right? My all time least favorite symptom has to be fatigue OMG i sleep on average 14 hours per day sometimes more, and no one understands that I dont wanna sleep I can think of a milllion and one things I’d rather be doing than snoozing. I get called lazy all the time which annoys me cause they dont get it, and to be fair neither do I.

I have no problems with carers, I was one up untill march when i woke up one morning and put on someone else’s leg (well thats what it feels like :wink: ). I have 3 boys 2 of which are high functioning autistics, they are all pretty self sufficent in that, we always cooked together and they know how the washing machine works ect… My husband wants to leave work to “look after me” sweet of him but I’m having none of that, life has to go on and to be fair if I let him do that, I really would be rock bottom. No when the time comes it will be carers, for now I just need to manage my time and the things i do better to ensure, I can keep things as normal as possible for everyone.

Like i said attitude adjustment :slight_smile:

Joanne xxx

Hi,

Thank you for your kind words, it means a lot to me, my out look is a little different today, i had an attitude adjustment via a bottle of bacardi and I have come to realise 2 things firstly my tolerance for alchol is not what it used to be and I feel terrible this morning (serves me right to) and secondly there are no answers in the bottom of a bottle, what ever will be, will be.

I hadn’t seen my doctor for 4 years cause I kept thinking it’s me. In that time the right side of my face went numb and my eye lid dropped. I have muscle spasms in my legs, arms and torso (I feel like i have snakes under my skin), I have loss of sensation in my right arm (like wearing rubber gloves) and muscle weakness, the same now with my left leg (makes stairs a nightmare). I have vertigo and balance issues my latest as in the last few days, I cant put my finger on it but it’s something with my vision, I had double vision for about 3 days and now thats corrected itself but my right eye waters and things dont look the same. If i see something move its just a blur untill it’s still again weird right? My all time least favorite symptom has to be fatigue OMG i sleep on average 14 hours per day sometimes more, and no one understands that I dont wanna sleep I can think of a milllion and one things I’d rather be doing than snoozing. I get called lazy all the time which annoys me cause they dont get it, and to be fair neither do I.

I have no problems with carers, I was one up untill march when i woke up one morning and put on someone else’s leg (well thats what it feels like :wink: ). I have 3 boys 2 of which are high functioning autistics, they are all pretty self sufficent in that, we always cooked together and they know how the washing machine works ect… My husband wants to leave work to “look after me” sweet of him but I’m having none of that, life has to go on and to be fair if I let him do that, I really would be rock bottom. No when the time comes it will be carers, for now I just need to manage my time and the things i do better to ensure, I can keep things as normal as possible for everyone.

Like i said attitude adjustment :slight_smile:

Joanne xxx

Hi Joanne, you sound just like me I have had so many tests that I’m fed up now lol. Hope things work out for you xx

Hi Joanne,

I am so sorry to hear your going through this, but while reading your post it felt like you were telling my story and I too have been recently told it was in my head and that I am just stressed and suffering from depression and anxiety. I was shocked. There is no anxiety or depression going on here, just lots and lots of discouragement due to these doctors not wanting to do the test necessary to rule out ms mimics or other testing like lyme disease etc.

Your story is so similiar to mine. I hope and pray for answers for you real soon. The only thing my doctors have ruled out for me have been lupus, and low b-12. I’m normal on both.

I had a mri of my brain in sept and back in 2011. MRI suggests demylinating process such as ms, and a couple other things that stated was less likely.

I recently had mri of my neck and that shows cervical straightening of spine, disc osteophyte complex, and herniated disc at c5-c6.

My speech hasn’t been the same since I had some sort of attack in sept and neither has my gait been the same. My husband keeps telling me I stray from left to right while walking down the sidewalk for example. I just can’t keep a straight walk.

I feel for you on how frustrating this is, and I will say this… It’s NOT all in your head. Keep pushing to find out what is going on and keep us posted. :slight_smile: