MS symptoms, really struggling but no diagnosis yet

New diagnosis and before diagnosis
1

Hi All,

I’m new to this and was hoping to get some help with your experience :slight_smile:

I haven’t been diagnosed but have been having MS symptoms for over a year now and was wondering if anyone had similar experiences!

I woke up one night last year and my whole right side was numb and I could barely move it. Previous to that I had been getting cramps in my right arm and it just kind of felt like I wasn’t able to control the muscle properly, when writing of putting on mascara for example it would just feel like it’s out of control.

Since that night I have had pins and needles in my lower limbs, and my right leg stayed weak. My right leg was at first really weak, I had a limp and I couldn’t properly climb stairs etc. I also couldn’t use my right hand properly. It then slowly recovered and after about a month I could walk better. However, for a whole year my arm and leg keep cramping up, they keep being painful (the sort of pain you have as a child when you grow) and they are weak. And the pins and needles are always there. I have also had twitching in difference places in my arm.

I feel extremely tired all the time, no matter how much sleep I get. It gets worse in the heat and if I had a drink of alcohol.

I am also getting more headaches, especially on my right side, it’s a stinging pain. I’ve had many cystitis this year, I do generally have problems with that but this year I had about one every month! I also feel like my libido is very low.

The doctors did the MRI and that was clear, apart from some potential thickening of some lining in the brain but they only thought that at first sight and looking at it again they thought it was nothing. I haven’t done the lumbar puncture because the doctors said it probably isn’t anything. I’m scared though because the symptoms aren’t going away. Some days I can’t walk properly and I am in pain every day and the pins and needles are driving me crazy!

There are more symptoms I haven’t mentioned but these are the main ones. I was just wondering if any of you had similar experiences?

Thanks so much for your help in advance, I would really appreciate any views :slight_smile:

2

First of all, your symptoms do sound worrying, but you should be aware that there are lots of symptoms which seem to fit an MS diagnosis, but are not. As you’ve had a normal MRI (albeit there was some debate about thickening of the lining - which wouldn’t be due to MS anyway), the chances of you having MS are really pretty slim.

There are other things that you could be investigating, from Vitamin deficiencies (specifically D and B12) or maybe Functional Neurological Disorder (FND): Symptoms - FND Hope International

Have you been discharged by the neurologist or do you have a follow up appointment? If they’ve ruled out MS, then do they have any thoughts about what is causing your symptoms?

You could see your GP and ask for blood tests to check your vitamin levels?

Seeing your GP for help with symptom management and an alternate view of what might be causing your ongoing symptoms might be a good next step anyway.

Best of luck.

Sue