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Worried about symptoms getting worse

I have had short bouts of dizziness, brain fog, profound fatigue and headaches regularly for about three years, but didn’t know what was causing them.

But from September I have been consistently ill with new symptoms on top of the dizziness etc. These are muscle weakness, tremors, strange sensations like someone walking over my grave, burning, and tingling. My body constantly feels overworked - like I’ve done too much in the gym - and I fluctuate between muscles which feel like lead or like jelly.

I got referred to a neurologist in November and have my first appointment on 28th January.

In the meantime I have felt like my symptoms just keep worsening. I haven’t experienced any more new ones since the start of this period, but the existing ones seem to just get worse and worse. The muscle weakness was so bad last night that for the first time I wondered if my legs would even hold my weight.

It’s so hard to live with this without having anyone managing your care and working with you on your symptoms. To feel ill for so long with no diagnosis and therefore no treatment or plan to manage life around it is tough.

I am confused at the moment about if this is ms is it normal to have a relapse for this long and for the symptoms to feel like they are gradually getting worse and worse? I generally read information about relapses coming and going more quickly. Can anyone share any experiences that relate to mine?

So sorry that you’re feeling rough at the moment, have you spoken to your GP? He might be able to alleviate some of your symptoms before your neuro appointment.

MS relapses can happen anytime & last for various amounts of time. When I was RRMS my relapses could happen very slowly, get to a peak & then slowly fade away, all this over a matter of weeks or months, no relapse was the same. I’ve also had relapses that have come & gone in a matter of hours…ms is very unpredictable & everybody is different. Your symptoms could be any number of things, maybe not ms, but your neuro will want you to have various tests done & the results in front of him before he may be able to say what the problem is. MS is notoriously difficult to diagnose so try to be prepared for the long road ahead. It’s also good to keep a note of any symptoms you might have, dates etc…which can be referred to later.

Sorry not to have been more help to you

Good luck

Rosina x

Thanks Rosina, that’s helpful to know re: slow progression of symptoms during relapse.

I asked my gp when she referred me about any treatment whilst waiting for my referral appointment and she said there was nothing she could give me.

I then returned and saw a different gp as my symptoms were worse - couldn’t stop shaking all over - and that gp asked me exactly what I expected him to do seeing as though I was already waiting to see specialist. He was very brusque and made me feel bad about wasting his time.

That’s one of the reasons why enduring waiting for referral has been so hard because I have had no relief from symptoms and no advice.

hi mel

you could phone the hospital neuro’s secretary to see if you can get a cancellation, to bring your appointment forward.

your gp should be able to treat you as any other patient.

you are feeling ill, unsteady and in pain.

this is exactly why people go to A & E instead of their gp.

some of the neuropathic pain killers are prescribed for other conditions - gabapentin and amitriptyline.

pester the gp for some support.

good luck

carole x

Thanks pigpen, you’re so right about a&e - my husband and I have had exact same conversation.

I tried ringing consultant’s secretary but got nowhere as she brushed me off saying they don’t get cancellations - people just don’t turn up.

It’s hard to know how to get help when the professionals are so locked into their systems.

I’ve waited six weeks already just counting down days of last three weeks until appointment. I just hope that once I’be seen consultant I can start feeling more supported.

Hi, i feel for you, i’m in limbo too, its awful not knowing and feeling so ill, i wish i could offer more advice, but feel stuck myself and have also been made to feel as if im wasting gps time, all i can say is hang on in there, its helped me reading all the good advice on the site, and now i’ve realized that other people have been through this and eventually got answers. Try to stay positive and believe in yourself and don’t let people put you down.

Michelle x