New to forum...and MS

New diagnosis and before diagnosis
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Hi. New to the forum and looking for advice. Bit of a back story, I’m 36 and have had symptoms of MS on and off my whole adult life. I was eventually diagnosed with fibromyalgia and told that it couldn’t be MS as I had limited neuro symptoms. I went on to have five children and after my fifth in 2014, within the space of a few weeks I developed a numb patch in my back, pins and needles in both hands and feet, loss of vision in one eye on several occasions, weakness mainly on one side, numbness in the face and tingling/burning all over. I was sent to a neurologist who told me clinically I was fine but did a brain MRI to be safe. When the brain scan came back clear I was sent to a rheumatologist as they said it was the fibromyalgia causing these symtoms. The rheumatologist told me there was no way it was fibro, sent me back to the neuro who again said I was fine. By is point things were getting worse, waking up choking in the night, difficulty swallowing, memory and cognitive impairment and palpatations. My GP sent me to a cardiologist who did a heart ultrasound and 24 hour ECG (all normal) so he sent me to an endocrinologist who tested me for all sorts before saying in his opinion, it WAS neuro. My GP then refused to refer me back to neurologist as by this point he said it was anxiety and he refused to fuel my worries. I then spent the next few months in and out of hospital with worsening symtoms before finally I developed tinnitus and was sent to ENT. They did a repeat brain scan and three days later I was rang to say they had discovered several lesions on my brain and it was MS afterall. They then said there is a 22 week wait to be seen by neuro!!!

I have now arranged a private neurology appointment for next week but we can’t afford to continue down private health care. Is it possible to start off privately and move back to NHS led care? Also do lesions on the brain mean MS with certainty? They said they will do a lumbar puncture which I am dreading. Already did a cervical and lumbar spine MRI but not thoracic? Is this significant? The spinal MRI showed two bulging discs and signs of nerve damage but no mention of lesions on the report that I could see. I guess a neuro will talk me through it.

Just looking for reassurance/advice and whether they can diagnose ms like this or if there will be more tests? Thanks.

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hi

yes you can revert back to nhs care, so don’t worry.

lesions on the brain do tend to flag up MS.

lumbar puncture isn’t as bad as it sounds - ask your gp for something to take the edge off your nerves (maybe valium)

ask for an experienced doctor to do the procedure.

good luck

carole x

1 Like
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Yes Carol is right it is legal to have private an then go back on NHS.

I can’t see the need for an LP; which is a diagnostic procedure; if you have a definite diagnosis.

If however you do go ahed​ the actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

The improvements they have made in Spinal Taps make all of this an occurance that happens less often.

Good luck.