If this was MS would I have a couple of weeks of symptoms and then feel better ?

I’ve been having progressively worsening symptoms since January (severe nerve pain, tingling, pins and needles, facial numbness, twitching) but I’m not sure the symptoms fit with MS. My MRI showed scattered FOCI in the periventricular area which could possibly be indicative of something, but maybe not. From what I’ve read of early MS, symptoms are acute for a few weeks/month then disappear before flaring up again. Is this right? As mine have been consistent and worsening for 8 months now, does this mean MS is unlikely?

Not necessarily. It could be you have progressive ms. Have you seen your doctor or a neurologist. That’s probably your best bet rather than Dr Google who is totally ignorant.
Hope you find answers soon.

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For many of us, Dr Google is about the only resource we have. The NHS is failing many neurology patients very badly. Very limited access to neurologists with huge waiting lists of many months to years, no access to meds, no access to physiotherapy, no access to MS nurses. GPs leaving in droves as they are left to pick up the pieces.

I’d follow up with your neurologist or GP. After 8 months of worsening problems, I’d ask for another MRi, both of the brain and spine and possibly with contrast, which will show any newer spots.

Hi Ziola. It sounds as if you’ve had a really bad experience with medics. That’s a real shame as there are many good GPs, neurologists and MS nurses out there.

Thanks for your responses, I really appreciate it. I’ve seen two neurologists, one on the NHS who dismissed it as “post viral syndrome” because it started with a fever (which I’d be happy with if it wasn’t progressing :slightly_frowning_face:) and one privately who told me he doesn’t know what it is but I should probably get a second private opinion from a neuroinflammatory specialist. He tried to do lumbar punctures twice, but failed because I’m prone to fainting (and I found it very painful for some reason).

I really don’t know where to go from here. Has anyone seen a really good private neurologist that they could recommend? I’m willing to travel across the country for answers at this point :confused:.

Prior to this I was fit and healthy, hiking up mountains etc. now I feel like a shadow of myself.

Hi - I don’t think anybody can speculate on any symptom. You do need to see the Neurologist who will be able to tick all the diagnostic boxes. Every best wish :four_leaf_clover:

where i live this is not the case. I can access my MS nurse anytime i need her. I have a telephone appointment with my neurologist in september i asked for it to be by telephone as going to an appointment is hard work.

You make it sound way worse then it is. The trouble is covid. It has caused a back log.

My care worker 3 weeks ago had a standard bowel test within 3 weeks she is having her surgery tomorrow for bowel resection as they found cancer, and she has had 2 phone calls from different nurses about her care after operation and dealing with Stoma bag.

she hasnt drawn a breath yet. Its not all bad. the worse places are where there are higher covid cases as people have ignored the advice.

Actually my MS nurse told me the worse time to get an appointment is between july and september as a lot of specialist seem to go on holiday around then.

Neurology services in parts of the UK were really struggling before Covid 19 was even known about. The UK has 1/8th the number of neurologists per neurology patient compared with the rest of Europe. In 2019 in the UK, 1 per 115,000 patients compared with 1 per 15,000 patients in European countries.

Yes, there is a postcode lottery. Our area (North Yorkshire / North-East England) is very badly served. Just showing a recent post which shows that MS patients have been abandoned in our area:

A friend of mine, a recently retired GP says that her GP practice were for years pulling their hair out over lack of access of their patients to neurologists, and the very long waiting times. She retired just before Covid struck.

And our area and York had one of the best compliance rates when it came to distancing, wearing masks, etc.