Am I being paranoid?

Hello all! Just looking for some advice really. I am 24 years old, and I am currently diagnosed with EDS, POTs and fibromyalgia. It is a real struggle to get doctors to take me serious as they believe I am a hypochondriac so I avoid going wherever possible. However, I am scared and I don’t think I can avoid this anymore.
I’ve been experiencing MS symptoms for a while now which have just been getting worse. We have a family history (one of my mums aunts had it) and I know it can be more prevalent with EDS. A few years back, I started getting motor “tics” - completely out of the blue and sometimes they’d be like full body jerks. I used to have perfect vision but noticed it deteriorating around the same time and got glasses for part time use which I basically use all the time now. About 18 months ago I noticed this horrible tingling and numbness in my mouth, lips and face and I genuinely thought I was going into anaphylaxis but nothing started swelling and I could still breathe fine so just accepted it. This comes and goes and sometimes I’ll go ages without it. The hand tremors started soon after this. At first it was just my thumb and only my left hand but it’s progressed to both hands to the point I struggle holding stuff and I just feel weak. I’m no stranger to nerve pain but the numbness and tingling I get in my arms now is definitely worse and I had to take a week off work recently because my left arm was basically useless. I’ve been getting awful dizziness as well (separate to my POTs dizziness) like I turn my head and the world keeps going and I’ve had several times I’ve been at work and genuinely worried I would fall down. A recent development with this is I’ve been having like carsickness which is pretty awful and I’m no stranger to nausea. There’s other small things, like my limbs not feeling like I’m in full control, or just general weakness, or I’ll be sat and the muscles in my leg will be randomly twitching. My bladder is awful and I’m actually currently seeing urology about this too. I am absolutely terrified and I don’t feel able to speak to anyone about it. I did see a nurse practitioner earlier this week (did not mention MS at all) and I knew immediately that’s where she went in her thinking. I’m due to get a blood test and then I’ll need to get a referral to neurology if that comes back clear but after having years of people telling me it’s just “anxiety” I fear I’m just overthinking.

  1. Yes, you’re overthinking!
  2. Your Aunt’s MS is irrelevant. Needs to be a direct descendent.
  3. Ask your GP for a referral to a neurologist for MS investigation, or
  4. Get a private MRI (£250?) on head & neck - much quicker than waiting for NHS referrals.

Hi Lollybee

I hope the urology team can help with the bladder issues, I know how stressful that can be.

Ask your GP for a referral to Neurology, if you haven’t already, as realistically, only a Neurologist can determine whether this is MS or not. They will want to rule out everything else that could be causing your symptoms, however, MRIs of both brain and spine; evoked potential tests and possible Lumbar Puncture will be required to get a clearer picture of what is going on.

It can take some time as many on the forum can confirm; keep a diary of your symptoms - When it occurs, how long it goes on for, what you were doing prior to the symptom putting in an appearance etc. this is a very useful tool when seeing GP/Neurologist or other specialists for that matter (I’ve been seen by many, many *ists).

When you see your GP - make a list of the 5 symptoms that affect you the most - and how they affect your day to day life.

This will help the GP/Neurologist in getting to the bottom of what is going on.