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Help cos I'm struggling this week .. undiagnosed

So 2 weeks after my 2nd AZ Covid jab (not sure if related)I am struggling to feel my feet … decided the time has come to get hand controls on my car to keep my driving. Having to stop for a couple of weeks which has upset me as love driving whilst they get fitted etc.

So my big problem is I am undiagnosed, only diagnosed loosely with Benign MS despite having every symptom going since 2001 - my MRI shows no lesions therefore I have no diagnosis or medication or steroids or physio - nothing! I started in 2001 with Optic Neuritis, then another big episode in 2011 with Transverse/Cervical myelitis which left me in a mess, mainly my legs affected, weak, numb, cant walk straight, leg fatigue - but no pain apart from stiffness. I never fully recovered and numbness always with me but sometimes better than others.

Having a bad week, cant feel pressure in my feet, rang doctor he was near useless, saying he can’t give me steroids, but he can check my b12 levels and if it gets worse go to AE and he’ll pop a note to neurology (who havent rang me in 18 months or gave me feedback from my MRI last year but I know no lesions on it). B12 could be another issue I guess, so best to rule out.

So what now? Does nobody do anything until I’m in a wheelchair? Its was gradually getting worse but this week boom! much worse. I could use a full diagnosis to get help with making me better. Is this a struggle other people have - I am in Surrey.

Any advice on how to get these feet better, what to do next, going to A&E will be fruitless, they will just refer to neuro who will take 6 months to get back to me and I can’t drive there anyway. Also dizzy, tinnitus and anxious and generally out of sorts, also pre menopausal … falling apart basically now I’ve hit 50.

Thanks for reading x

Hi, sorry to read you are having a bad time of it. I can relate to hitting 50, being menopausal and feeling as though you are falling apart!
I received official dx in 2017 but had been experiencing symptoms on and off for a good 8-10 years before that. The road to MS dx can unfortunately be a long and bumpy one.

I would push your GP to get you an appointment with Neurologist, or contact his secretary directly if you have their details and demand an appointment. Not too sure why your GP couldn’t have prescribed steroids, although they won’t cure a relapse but can help cut it short. Do you have the option to see a different GP?

The best thing you can do is make a nuisance of yourself and keep badgering for help. It’s tiring and the last thing we feel like doing when unwell, but advocating for ourselves is often the only way to get things moving. If you wait for the medical profession, you will wait forever.

Best of luck and keep posting here if it helps. You are at least among people who understand all the frustrations that MS brings.

the idea of the vaccine is to stir up our immune responses and learn about the covid spike protein. In doing so this can have a knock on affect with our bodies not only if we have MS but without. to be honest my friends without MS had more symptoms then I did after any of their jabs.

You were diagnosed with TM which can affect your body in the same way as MS. In 2011 you were left in a mess with the TM and have on top of that menopause can trigger some weird stuff too, and tinnitus can be triggered through infection, anxiety and heat.

I would think having been diagnosed with a rare rare inflammatory disease causing injury to the spinal cord you would quite possibly be still experiencing some residual side affects.

MS can be associated with TM. A person i met on a forum had TM and about five years later went on to develop MS.

If it is MS then all these weird things will settle down. Try to take a deep breath and just enjoy your home, and concentrate on things to do. you have already organised your car which is good.

we all get anxious believe me. BUT I have found that stress is the worse thing for MS and other similar diseases. xxxxxxxxx

so it could be that your auto immune system is working well and has stirred up responses which then affects whatever is going on.

Sorry to hear this.
Have you had a spinal MRI and been tested for NMO? Just something to rule out with clear brain MRI.

@Mum23Boys how are you now hun?