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Hi All!

A bit about me. Just over two years ago I felt sudden, severe, pins and needles in my hand that traveled up my arm and then suddenly felt a massive pressure/fuzziness in my brain (hard to describe). I couldn’t speak or move much. Like numbness all over my upper body. I thought I had had a stroke. Had some pins and needles later that day and again the next day had another episode like the previous day. I went to A and E. They were perplexed. Checked for Low blood sugar and signs of stroke but found nothing. A consultant said most likely silent migraine. Over the next 6 weeks I had perhaps 20 of these events, after which I was tired and weak. In the fourth and sixth months I had the classic Migraine with aura(severe headache and classic visual aura).

I then began to experience shooting, stabbing and electric shock pains in my hands and feet initially and then my arms and legs. This was on a daily basis. Some days 100s of shocks and others 10s. I would also have minor brain events were my vision went blurry and lights were too bright for my eyes. I would always feel nauseous when this happened and my brain was foggy and confused.

The first consultant I saw was two weeks after my first incident and arranged by A and E. Her report said I had dissociative symptoms! Perhaps I didn’t describe what was going on properly. I was shocked. I then decided to pay for a second opinion privately as I wasn’t taken seriously yet my life was upside down.

For the first 4 months I had major and minor brain events, followed by pins and needles in my face and scalp and dizziness and nausea and fatigue. I also had daily nerve type pain as described above. I also started seeing light flickers, fixed coloured dots and green arcs of light through my vision on a daily basis.

As a self employed father of 4, the youngest only 8 months old this time was extremely challenging to say the least. My brain seemed to be badly damaged.

I then saw a migraine expert that I had searched for online. He said Migraine with Aura, anxiety and primary stabbing headache that had spilled over throughout my body. This didn’t sit well with me as I didn’t feel that I had 3 conditions, I felt that one thing was causing all of this.

For the next 20 months I had accepted having migraine and removing any possible stress from my life and just trying to get on with things as best I can. I have never really felt anxious and am very laid back, even with my illness. From around the sixth month I often experience muscle twitches, especially when lying down to sleep but sometimes during the day when it feels more like myclonous. This comes are goes throughout the year sometimes happening every day for months.

Throughout the past 20 months I have had symptoms most days of the week. It’s as if I have been left with some nerve/brain damage. About twice per year I have spells of around 2-4 weeks were things get much, much worse and I can’t go to work. I no longer have the ‘silent migraines’ but have confusion, shaking, coordination problems, trouble walking, all over nerve pain, difficulties getting words out, etc. I run or cycle daily and lift weights 4 times per week but can’t do any of this when I have my bad few weeks.

For the past 12 months my main complaint would be serious exhaustion where I feel that my brain is about to just shut down and I will collapse. Horrible thing when trying to work. It feels like torture trying to keep my eyes open.

I have now passed my most recent ‘episode’ and have constant pins and needles in my hands and feet accompanied with short, stabbing nerve pain. I sometimes have volleys of enormous stabbing pains in my arms and legs that are the worst possible thing to imagine for the uninitiated. I have had massive shock like pain from my waist to my feet. First time for this. Very different than anything before. I have also have my spine shake from top to bottom. This was a little frightening as a new symptom.

I have had complete numbness of my face on the left side and then my left hand the following day for around 20 minutes each time.

There are many other things that happen to me on a weekly basis but feel like a hypochondriac to mention everything. I feel that after every relapse I am left with new, permanent although fairly minor issues. The pins and needles rarely leaves.

I had a neck and brain MRI around 4 weeks after my first ever episode which was clear and was a major factor in the Neurologists dx of Silent Migraine, Anxiety and Primary Stabbing Headache.

At this point my family and friends are more concerned than I am. I have what I have so there is not much point worrying. However with four young kids it would be nice to know what exactly is going on.

Is anyone’s experience like this?

In part, yes; I can certainly relate to the ‘fatigue’ bit, and a couple more annoying symptoms… but the fatigue is the real killer. I have to sit down before I fall down, sort of thing! Turns me into a complete party pooper

Perhaps you ought to get another referral to a neurologist? Get another opinion so ask your GP to refer you to a different neurologist?

It perhaps is Migraines, but it could be something else. I’ve never experienced MS relapses like these, am definitely obviously, your MRI was clear. But it might be a good idea to see someone, maybe get another MRI? Just another view of what is wrong.

Certainly as Fracastorius says, the fatigue part is certainly familiar to those of us with MS fatigue (see https://www.mstrust.org.uk/a-z/fatigue).

I hope you have a good Christmas, and maybe get some more help after the New Year.

Sue

My GP has referred me to another Neurologist as she is concerned with my daily pins and needles and muscle twitches. Will see what they say. I just want the right treatment. Hope you all enjoy the holidays!