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Hello...What can I expect over the next few weeks please.

Last summer, i went to my GP complaining of aches and pains throughout my body, but there was no visible problem.

Last November he sent me to hospital as I had pins and needles over most of my body. I was diagnosed as hyperventilating and sent home. Both GP and I disagreed so then I had an urgent referral to see a neurologist-just before Christmas.His immediate view was a degenerative condition but my body wasn’t acting in the way he would have expected.

He ordered An MRI scan but my referral wasn’t received. Finally had the scan at the end of February, but I haven’t got an appointment with the neurologist until April 5th.

2 weeks ago, my GP informed me that I have ms. I’m glad he told me, as it’s giving me chance to think of questions etc when Ido get to the hospital.

At the moment I still have pins and needles and numbness throughout my body, a very painful neck and spine and fatigue is probably my biggest problem.

My youngest child is due to start her GCSE exams, so I’m determined to keep quiet about this until her exams are over, but I’mreally wondering about what treatments I can expect to help with the symptoms.

I should add I’m a 44 year old married female who works full time and drives 40 miles a day to get to work.I’m currently taking Amitryptyline, Naproxyn and Co-codamol to try and control the pain, but it really hasn’t been working over the last few days and is beginning to get me down.

Thanks in advance

Hello and welcome :slight_smile:

I’m a wee bit concerned that your diagnosis has come from your GP because GP’s aren’t actually allowed to diagnose MS. So I’m wondering if he was relaying information from your neuro or he was making his own conclusions? If the latter, then I would recommend waiting to hear it from the neuro, just in case the GP has jumped the gun.

Assuming it is MS, then there are a whole load of treatments to help with symptoms, but fewer to help with MS itself. Taking the symptoms you mention: for pins & needles and other forms of neuropathic pain, the main meds are amitriptyline, pregabalin and gabapentin; for spasms and spasticity, the main meds are baclofen and tizanidine; for fatigue, the main meds are amantadine and modafinil, but modafinil is increasingly hard to get as it’s not approved for MS. Unfortunately, fatigue meds are hit or miss, only working for maybe 50% of people, if that. I mention both neuropathic pain and spasms/spasticity because either could be causing your neck/back pain. Working out which one is important to getting the right med. Neurophysio can also help with quite a lot of MS symptoms so it might be worth asking about a referral for an assessment - if there is nothing in particular they need to do with you at the moment, it will at least provide a baseline.

Treatment for MS depends predominently on which type of MS you have. If it is relapsing remitting MS (RRMS) and you have had at least two “clinically significant” (ie debilitating/disabling/serious) relapses in the past two years, then you may be eligible for disease modifying drugs (DMDs). The best place to learn about these is the msdecisions website. The “first line” DMDs (the ones that most people with RRMS get to choose from in the beginning) reduce relapse rates by about 30% on average, reduce the severity of the remaining relapses, help to slow progression, reduce disability and extend life span. They are not a cure and they don’t work for everyone (one of the reasons for the 30% average). The “second line” DMDs are stronger and have a bigger effect on MS, but come with more severe potential side effects. Unfortunately, there is no DMD for primary progressive MS at the moment.

I know what you mean about keeping quiet until the exams are over, but your daughter may be more aware than you think and she may even be worrying that you have something more seriously wrong with you than MS. If she knows you’ve been going to the hospital and can see you’re in pain and fatigued, finding out it’s MS may be a relief. But obviously you know her best. Hopefully she’ll be completely oblivious and will do really well in the exams :slight_smile:

As far as pain relief goes, naproxyn and cocodamol don’t do very much (if anything) for neuropathic pain. You would probably have more luck increasing your amitriptyline dose, so maybe speak to your GP about it? Getting pain under control can help loads with fatigue too, so getting the right meds and the right dose is important. Unfortunately, this can be different for everyone, so a fair bit of trial and error can be involved.

If you find your pain lessens when you take the naproxyn and cocodamol, it may be that the pain in your neck/back is muscular though, in which case something like baclofen may work better. A neurophysio would be a good person to see to get an opinion on that, if your GP is unsure. You’ll probably see the neuro first mind you, if waiting lists are as long in your area as they are in most :frowning:

Hopefully the neuro will be able to sort out the right meds for you when you see him - don’t forget to take a list of the symptoms you need help with as well as your questions.

Hth.

Karen x