My husband has suggested that I post …I’m a white female, mum to three beautiful boys 5 years, 3 years, and 5 months. I’m 37 years old currently exclusively breast feeding – History –migraine with aura. Hyper mobile wrists. Always tired. All of this (and more) stopped when i went gluten free (intolerant not celiac) 3 years ago after issues with my bowel – I felt Amazing up until…
20 September 2015, 7 weeks after the birth of my baby, I had a period of persistent pins and needles in my face & scalp, my feet up my legs and my hands – the sensations ranged from soft tingles (almost nice) to intensely burning hot prickles – at its worst my skin felt itchy. It was (and continues to be) worse when I get hot or very cold(in the bath my feet/legs buzz). I also had numb spots on the tip of my nose, tongue, roof of mouth and lip (whilst in physically different places they felt like they were in the same place on each).
I have a weakness (does not stop me doing anything I just have to work harder/muscles get tired quicker) on left side. I struggle to lift my baby I don’t feel strong enough. During this period my concentration and ability to do the most basic task were extremely poor – I would forget what I was talking about mid sentence. Other times I knew what I wanted to say but it would just come out all wrong.
Twice whilst sitting on the floor leaning forward to see to my baby I have experienced an electrical light/buzz in my right thigh – for a few brief seconds I could feel the whole nerve light up. When the tingles were permanent, most of the time when I bent my head forwards the buzzing in my feet intensified. Also sometimes when I turn my head/twist my neck to the left my scalp buzzes.
Tingles became intermittent 7th October. On 27 October I felt like something had changed and not so tired/ as tingly.
GP did blood tests thyroid diabetes CBC and B12 all of which he said were normal and referred me to Neuro; Neuro did a very brief exam didn’t tell me results but noted some weakness on my left side (arm and leg) and referred me for brain neck and spine MRI. I have had an MRI (no contrast) which has come back clear, my Neuro recently summed up findings as ‘we did the mri to look for things like MS - its not MS its one of those things we wont ever find the cause of typical in females of your age’. He has referred me back to my GP.
I was taken aback when he gave me the results and only later have I started to question what he said. I have asked for a copy of my mri report (which the secretary said she will see if the consultant will let me have a copy - Im still waiting to see if I am going to get it). I appreciate I wont understand it – but I need to see something in writing.
After the mention of MS I have had a look at the symptoms and fear that the neck and heat thing may be Lhermittes coupled with Uthoffs.
I suppose my questions are –
Does the neck thing sound like Lhermittes? Has anybody experienced similar? Would it not show on a MRI or is it possible that this could be the beginnings of something not yet showing on an MRI? If so how long do I wait before going back? What questions should I be asking? Should my GP be looking to rule out other stuff? Does anybody feel that a lumber puncture would be beneficial? Should I just be accepting the ‘female of a certain age’ diagnosis? (bearing in mind that I am an old, new mummy again and my hormones may be up the wall…)
I appreciate the time it will have taken you to have read this and any responses made –