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Trying to find answers

Firstly hi everyone. I’m trying to find answers to longstanding symptoms which are not only getting me down now but also are emotionally and physically draining.

I get the impression the docs feel I’m simply a hypochondriac or simply a time waster. I’m certainly not imagining anything, certainly not the pain etc.

Hopefully someone can either offer advice or point me in the right direction. I’ve arrived here today after putting all my on going symptoms into Google. I have no idea if this is Ms or something similar.

Where did it all start?

Looking back now about to 26 years ago I had meningitis like symptoms and had a lumber punch.

But fast forward to about 8 years ago on holiday where I felt dizzy and had stomach pains. Returned, thought it was appendicitis as doubled up. Told a stomach bug.

Pains continued an told it was likely ibs. No further tests done.

2 years later an idea start getting pain between shoulders and up the neck, and lots of headaches. Advised it was in my back & the neck and advised to see a osteopath. Didn’t really do much. I do always get “knots” the on my neck when symptoms flare up. Usually at the base of the scull or near shoulders.

Then started getting stabbing chest pains. Ecg done and cardiologist said very minor abnormal rhythm, something pretty much all of us have and interestingly mentions fatigue syndrome.

Headaches and chest pains continue, along with neck pain and pain behind the right eye. Signed off with stress for 4 months.

One day had numbness down whole right side. Cue a day in a&e with yet more bloods and urine tests normal, and now a head CT scan. Told normal.

Currently referred to a urologist for pain in bladder, genitals during ejaculation and intense pain in the pelvic bone on the right.

And so on an so on. Everything comes and goes, sometimes mild, this week quite bad. I was weak on right side and excruciating pain behind, in and around the eye with dizziness so bad I feel I could pass out but don’t.

Am I mad, imagining it all or simply need to scream and shout at the doctors?

Thanks for reading my essay, and for any help you can offer me put this into some sort of box so I can deal with this and get my life back.

Hello and welcome :slight_smile:

Having read your symptoms, my gut feel is to suggest migraine rather than MS. Before you stop reading, thinking I’m nuts(!), let me explain my reasoning…

There are different types of migraine. Some types are pretty ordinary and cause headache, sensitivity to light/noise, some nausea, etc. A lot of people get this type of migraine. However, there are less common types of migraine that cause extensive neurological symptoms, sometimes without any headache at all. These migraines can last anything from hours to days and, in some cases, even weeks. And a lot of what you’ve written is consistent with migraine: you mention neck and head pain, eye pain, symptoms coming on while you have knots in your neck, everything coming and going. So maybe have a look at this link (and the rest of the site) to see if it rings any bells: http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913?

Saying that, I can’t see how migraine can explain the urological symptoms and, of course, I could easily be wrong: not only am I only going on what you’ve written and what little I know, I’m not a neuro! And, tbh, that’s the person that you need to see.

Unfortunately, neurology is a complicated speciality, with hundreds of conditions sharing very similar symptoms and very few of them having definitive tests. That’s why the average GP doesn’t know very much about it - and why you should press for a referral to someone who does.

I hope you get some answers soon.

Karen x

Many thanks Karen. As I posted, trying to find answers and no idea if I’m in the right place for the symptoms. All I know is I’ve reached my limit of simply getting on with things and being made to feel like I’m wasting the doctors time and imagining everything. If it’s migranes, then that’s great as I can get help to deal with things. How do I avoid getting fobbed off and get referred? The bone pain an urological issues make me wonder what is related and what isn’t

Getting a referral out of a GP who’s stopped believing / supporting can be damn hard work :frowning:

If I were you, I would start by making a list of the most severe symptoms that I have regularly and noting any pattern to these if there is one. I would then tell them to my GP, tell them that I have been considering whether or not there might be something underlying these and that I would like to see a neurologist to be sure. Referrals eat into GP budgets, so it can be harder than it should be to get them and a lot of GPs will dismiss patient’s concerns at this stage. This is when you have to stand firm. Repeat the symptoms. Emphasis the debilitating nature. Ask the GP how they can explain it. Ask again for a referral.

With any luck it’ll be easier than you expect!

Ultimately, if your GP won’t listen and/or won’t refer, then a new GP is in order.

Good luck!

Kx

Thanks again for your help. Not sure if relevant but I have a sibling with Me, and given the cardiologist put in writing about chronic fatigue syndrome in the letter to my doctor should I make a point of mentioning this?

I wouldn’t, but I’m a cynic - too many medics are unsympathetic to people with ME/CFS.

I’m not going to be there though - you have to do what you think is best. And I could be wrong anyway!

Kx