So scared I have MS- mother has it

Hi, this is my very first post because I have been driving myself absolutely sick with worry and I am looking for any support.

About a year ago, I started experiencing tinging in my hands and feet, mostly my finger tips. I remember I was lying awake at night, thinking about MS and then the tingling came on, all of a sudden out of nowhere. I was thinking about it because my mother has secondary progressive MS.

I went to see the GP who pretty much dismissed it as stress as I was in uni at the time and did a couple of movement tests and sent me on my way. She said if it was to get worse, to come back. It continued on and off for about a year. I had had it once or twice in my leg, arm and face but it was so small that if I rubbed the spot that was tingling it would go.

The tingling feels like a small pin prick tingle in my fingers and feet, and swaps fingers. Since allowing myself to research MS for a couple of months recently, I have been driving myself absolutely sick with worry. I am crying every day as I have watched my mother go from being an active woman to wheelchair-bound and I am so scared I am going to have the same fate.

Since researching a few months ago, I have started to experience more symptoms. Like, being conscious of walking, lower back pain that radiates into my hips and the finger tingling has come back. I am unsure whether my symptoms are because I am actually ill or because I am making myself ill. The back pain is improved when I am more active, but the tingling in my hands persists. I have muscle twitching that is bad when I am anxious. I occasionally get tingling in my scalp.

I have been referred to a neurologist by the GP and have waited 3 weeks for the initial appt. and have still not been contacted. I am absolutely driving myself insane. I have no relationship with my mother due to personal reasons so I can’t even have her to talk to about this.

I go between telling myself I am stressed and the tingling is postural or circulation to telling myself I have full blown MS and I am going to be wheel-chair bound. I can barely sleep and can’t decide whether I would want a diagnosis or whether this would colour my twenties and that not finding out is the best way.

Any advice would be greatly appreciated as I am sick with worry.

Hi there,

my Mum also has MS as well as me. She has had it for over 30 years, she is 87 now. I am newly diagnosed, so fully understand how you are feeling, especially about the fears for the future. What I would say is I also suffer with anxiety, which can make rationalising very difficult. I wonder if you do are experiencing a big dose of it too. Anxiety in itself gives you physical symptoms, such a trembling, pins and needles, muscle tension and twitches, which can easily be confused with new/worsening symptoms. Might be worth speaking to your GP about the level of anxiety you may be suffering with, to see it they can help with it. Then see if your symptoms continue. Just an idea, good luck and be well.

Hi there Am sure this level of worry resonates with lots of us here including the torture about symptoms and desire someone can give us answers re likelihood here but no onecan unfortunately or would.Altered sensations can be a v early symptom but also caused by lots of other reasons inc b12, parathyroid probs etc. Anxiety can do it too due to hyperventilation and impact if this- even if mil, electrolyte probs so hopefully GP has bloods. Its understandable you are worried re your mum and though am still waiting for MRI, have read lots so aware that whist it can be familial- its not inherited. Also everyone’s MS is different and lots folks don’t need wheelchairs. Your mum has spms which again brings different emphasis re what treatments etc there are IF its MS. Neuro tests done by GP will show some dysfunction eg weaknesses or balance probs etc but doesn’t really focus on pins and needles etc so fact an onward referral has been made is a positive first step. In advance of it- keep a diary of symptoms/ place/ tine/ type/ context etc. You sre likely to wait for appts…neurology and then amy radiography/ imaging so try not to over worry. I do know its hard esp if experiencing symptoms as when they’re there its a horrid reminder. Hope you get appt soon and tingling calms down to let you relax a bit

Hi anon. like EML says, MS is not genetic, however it can be familial…ie run in families. We have seen evidence of that here in the past.

I know how utterly terrifying the thought of having MS is. Ive had it 23 years. It took eons to get a diagnosis.

These forums are full of people who have also had MS a long time, yet only a small amount of us are wheelchair users (me included).

But even with that, there IS still a good life to be lived with MS.

Have you thought about trying CBT or Mindfullness? Both of these therapies will help you manage your fears better.

Wishing you all the best.