What next

not sure what to do now??

In march I was admitted to hospital with suspected stroke. Thankfully no bleed on the brain. I was then diagnosed with hemiplegic migraine and told the symptoms would ease over a few days. No migraine was present at the time.

However in the months that have followed I have had more symptoms arise. I struggle to walk some days, occasional stuttering, vision loss. Pins and needles, numbness down my left hand side, what I like to call 'my phantom of the opera mask of coldness/numbness. Cramping in hands but suffer more with cramping in my legs and feet, I have since sold my manual car to buy an automatic.

Thankfully my MRI in my head and neck have come back clear. I have been back to my GP because I am struggling with tiredness and pain on an almost daily basis.

On Friday my GP told me there is nothing medically wrong with my and that it’s all in my head. This was the second GP I have seen. i burst in to tears and left.

Today I woke up deaf in my left ear. How can this all be in my head??

I don’t know what to do

hi bear

your gp is going off the results given by the hospital.

go back and tell the gp how much you are struggling and how upset you have been.

do not assume it’s ms but go to doc with a clean slate and let him decide.

make the cramping the focus of your appointment which he may be able to treat. then go through your other symptoms

if no treatment is offered try magnesium because a lack of this causes cramps.

if oral supplements upset your tum, use a spray (holland and barrett do one), it is more easily absorbed via skin.

carole x

Good morning CatWoman.

thank you for your reply. I will certainly give magnesium a try. I am thankful of the clear MRI.

I had gone back to my GP because I was hoping for help in what to do next as I am still really struggling. Unfortunately she made me feel like I was making this all up, reduced me to tears and so I walked out. I am not assuming this is MS, I joined this group after my neuro said she was checking for it. It has since come back negative and I am looking for help/advice on what it could be. I was hoping someone may be in the same boat.

The last two nights I have struggled to sleep and my skin has felt like I have something crawling on it.

I know something is wrong with me and I don’t know what. I just want to get back to my old self.


Hey Bear, I am pretty much in the same boat as you. If you read my previous posts, you will notice that we share many things, symptomatically and psychologically. I like your description of this “cold sensation”, which indeed somehow could make you think of the phantom of the opera mask (I still remember watching this play in NY as a kid, and the mask is quite eloquently summing up the sensation I feel hehe). On my side, I would not call it definitive numbness, but more like a cold stream of emptiness running on some parts of my left cheek (i.e. it came since three days now, and come intermittently). My MRIs were also clear, and I was severely deficient in Vitamin D (i.e. I am currently investigating whether taking high supplementation with the help of a doctor could help). I am going to see an endobiogenic doctor soon as well in order to see if he can shades some light on what is happening to me. Anyway, I thought that I would share with you some words of empathy. Take good care, Bear! Blue Marble

Hi Blue Marble.

I also have low D3, I am on 10,000 mui daily. My B12 was on the low end of normal so they gave me injections to see if they would help. Didn’t feel the needle at all left side and when the same nurse put one in my right arm I really flinched and the pain was not nice. She was surprised to see such a reaction after no reaction at all the other side. Her words were “wow, you really didn’t feel the other side did you!!”.

I used to run quite a bit and have missed a half marathon in October as now when I run my vision blurs. When I did another half Marathon in February this year I lost all feeling in my legs, I initially blamed it on new trainers so on my next training session whilst wearing my older ones it happened again I thought maybe my laces we too tight.

I really miss my active life style as I struggle with walking now. My weight gain is a side effect of this and the pregabalin I am on

hows your day to day??

Bear xx