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Not sure what to do next

New member here and I am in the unusual situation that it was not my doctor who suggested MS but my local chemist!!!

I had been attending the docs for a few weeks trying to get them to look at all of my symptoms as a whole rather than individual entities, and after the 3rd time I was ‘venting’ in the pharmacy and the lovely chemist came round and chatted with me. She asked what all of my symptoms were and I told her (list below) anyway,she said had the doc considered MS and I was quite taken back by this comment, I knew of the illness but like many people I did not know exactly what it was, but on further investigation I realised that a lot of my symptoms were listed on this very website.

Symptoms:

Migraines (upto 8 per month for the last 20 years), headaches (every day 8 years), tingling in both hands (constant for last 5 months),joint pain and muscular pain (daily for last 10 years), dizziness and nausea (especially when standing up or just looking down), constant back pain (lower-10 years,upper-6 months), neck pain (6 months) forgetting words partway through a sentence and using the wrong word for everyday things (last 8 months) periodic hand tremors (on and off for 2 years) practically zero libido (5 years) sleep problems ie,getting to sleep and staying asleep(5 years), lethargy, could fall asleep at drop of a hat if given the chance, but mainly afternoon. Mood swings (husband calls me Jekyll&Hyde) There are a few more things that I could list but I will stop now.

My doc has referred me to a neurologist for my migraines and has ordered an abdominal ultra-sound (she thinks I have IBS), the problem I am having is getting the doctor to look at the symptoms as a whole rather than individual events. Any ideas?

Hello, and welcome to the site

Seeing a migraine specialist is not a bad first move because migraine can cause all sorts of neurological symptoms so it will be really difficult to tell what else, if anything, is underlying your symptoms until you get that under control (8 a month is way too many to not try preventative meds). It’s also sometimes easier and quicker to see a headache specialist than an MS specialist and they are neurologists after all, so they will be considering other possible causes and may well send you for an MRI which will cut down on the tests needed if you are then referred to an MS specialist.

Please try and keep an open mind throughout - there are literally hundreds of conditions that can cause symptoms like those found in MS, including treatable things like vitamin deficiencies.

So hang in there, and prepare for a bit of a long haul - neurology is complicated!

Karen x

Thanks Karen, the migraine specialist is my doctors last resort as she cannot prescribe me anymore drugs, I have used preventative, ones to take whilst migraine in progress and the type to take just as migraine begins. The preventative do not agree with me, for example; the epilepsy ones (newly licensed for migraine) cause full body sweats to the point of having to change clothes and they gave me headaches. The rest of the drugs only work for short periods before they have no effect on me whatsoever. My doctor went back over my 23 year migraine history and basically said I had had everything she was able to prescribe up to and including the anti-depressant type drugs. I found it amusing that it took 23 years to go see a neurologist. Anyway will see what happens in November with that.

I don’t mind how long it takes I just want answers as to why I have all these symptoms. Guess I have lived with whatever this is this long a few more years won’t hurt.

There are things that a neuro can prescribe that a GP can’t so it might be a good thing for you anyway. For example, my neuro talked about 3 day infusions in hospital and a new drug that works really well, but hasn’t actually been approved for migraine (it is in other countries). Do push for an explanation of how your other symptoms could possibly fit with migraine though and say how the pharmacist mentioned MS. You don’t want the consultation to be only about your headaches.

Have you tried vitamin B2 (400mg a day) btw? I saw a migraine specialist earlier this year - I didn’t particularly want to add yet more meds to my normal intake so he said to try B2 before trying other things. I was a bit sceptical so looked up the research on it - there isn’t a huge amount, but it consistently shows a significant improvement in 70%+ of people who try it.

It’s certainly worked for me - I’ve gone from a minimum of 2-3 days of migraine a week to maybe 1 every 2 weeks :slight_smile:

If you haven’t tried it, and want to, you need to build up to 400mg to avoid side effects. I started on 100mg and increased it by 100mg each week. I began to notice the difference at 300mg. (Btw, it turns urine very bright yellow!)

Kx