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Anonymous
Should I be pushing for further testing?

Hi there I guess I’m just here to sound off and get peoples thoughts as to whether I’m being irrational or I have a reason to try and push for further testing. 

So my background… 

i have had various neurological symptoms/ sensations for around 5 years now. These include…

tingling in hands,feet, and legs. Mainly on my left side.

Numb sensations on fingers and toes although they aren’t numb to touch.

Twitching mostly in my legs but also around other parts of the body.

Burning points on back.

Buzzing points on legs.

Vibrating sensations on bottom of feet or toes.

Pain that doesn’t ease with pain killers in my ankle/feet/calf of left leg.

Pain in forearm of left arm. 

Odd pains in left eye and eye generally just feels uncomfortable but never lost vision etc 

headaches/migraines

odd dizzy spells

days I just don’t feel right 

fatigue 

muscles tire easily 

some days I find it hard to concentrate but this isn’t often. 

 

Ive been seen by three neurologists. The first did a brain scan which was clear and put symptoms down to FND​

second one was after my first baby and I had a private scan which was also clear and he said symtoms would just go away. 

Third one was more recently after my second baby. I suffered a major anxiety crisis and ended up being seen by the mental health team due to the anxiety over having MS. I saw a private consultant who reassured me it wasn’t MS and sent me for nerve testing to rule out carpal tunnel. I’m awaiting results, although it’s been a bout a month now and not heard anything. 

 

I feel like now I’ve had this anxiety attack,  my GP just puts all my symptoms down to anxiety and I’m scared something is being missed. She says she sees so many patients similar to myself where they just can’t say what’s causing the sensations but they are real. I am waiting on CBT which she feels will be really helpful. 

 

My worries are still pretty high, especially as the last couple of days my foot and leg have been so painful and I’ve had a twitchy, vibrating foot for days now. 

 

Should i I be pushing for a scan of my spine, could I have lesions lower down than the cervical spine and that’s what is causing the leg issues. 

I hate that everyday I am waking up scared about whether part of my body is going to fail me, whether today is the day something horrible happens to me that would really point to MS

my Mother has MS and it’s my biggest fear. Her life has been ruined by it (Dad left her, lives on her own, has no quality of life and has now being diagnosed with dementia at 62)

 

i know I have a lot of anxiety around having MS and that def won’t be helping the disputation but I equally don’t want that to be covering up that I may actually have MS!

 

thank you for listening and hopefully understanding my situation 

hi anon

get a grip on the anxiety.

however unlikely if you DO turn out to have ms, it probably won't take the same course as your mum's.

the CBT will help loads.

FND is a real condition so has the neuro said anything about the options for treatment.

honestly, i think you should stop expecting ms to rear its ugly head.

focus on your babies and get lots of cuddles because before you know it, they'll be too big for cuddles.

live your life and be happy.

carole x

I have MS

Hi

So you’ve had 2 negative brain scans and seen a total of 3 neurologists. None of whom think you have MS. I know you are still waiting for the results of your nerve conduction test. 

It does seem that the evidence is there to demonstrate that you really don’t have MS. Regardless of the formal tests, a good neurologist uses the physical examination to help make their diagnosis, or make the decision that you don’t have MS. 

I completely understand why you’re so worried about the possibility of MS. It’s not just watching your mother suffering with MS, it’s the very real neurological symptoms you have too. 

Have you seen https://fndhope.org/fnd-guide/ ? If not, have a look at it. It might help just to know that FND is a real diagnosis on its own, it’s not just a ‘you don’t have MS’, non-diagnosis. 

It might be a good thing to start keeping a diary of your symptoms, being completely honest for yourself to keep track on what symptoms you have and how you feel. Keep note of your anxiety as well. 

When you next see the neurologist to get the results of the nerve conduction test, ask him/her what help you can get with the neurological symptoms you have. If you are to get a handle on your anxiety about MS, you also need to get some help with your physical symptoms as well as your emotional state. Having CBT will I’m sure help, but having your physical symptoms recognised would help too. 

Best of luck  

Sue

 

Anonymous

Thank you for both your replies and I know I’m being completely irrational. I am medical myself, if this was my patient telling me this I’d be telling them exactly what you’ve said…that THREE specialists have told me it’s not MS so therefore I need to accept it and try and move on. I’ve never suffered with anxiety before but it’s bloody horrible. It just takes over your mind and every time I start to think rationally, the anxiety demon creeps in and says “but what if…”

The consultant that diagnoses FND just literally said that, it’s FND, your symptoms aww real but it’s not MS go enjoy your life. No support no follow up. Then I added myself to the FND Facebook group for support and dear god it freaked me out! Some people were so bad, couldn’t walk, had fits etc etc couldn’t work, needed carers. I have a few neurological sensations but that’s it! So I left, as I didn’t feel that was what was wrong with me and I just found it too much.

I’ve been waiting almost 6 months now for CBT on the nhs I just wish it would hurry up!