Birmingham friends

Hi all I am looking for friends that live in Birmingham so that they may give me advice on treatment in this area Many thanks Julie xx

The “near me” facility at the top of the page will detail support groups in your area and might be useful.

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Thank you. New to this sorry xx

Hi Julze,

I live south of birmingham & was diagnosed at the QE hospital but due to postcode lottery I now travel to Coventry (6 miles further).

Message me if I can help at all.

Sharon

I also live south of Birmingham. My neuro, Mr Mazibrada, is based at the QE. If you require Disease Modifying Drugs, you’ll probably be referred to him as the drugs can only be prescribed by certain neurologists (probably the government’s way of controlling costs). I was originally on Betaferon and he offered me a place on the clinical trial he was running for Gilenya because I had relapsed twice. I’ve always found him patient and helpful, and he doesn’t rush through appointments.

Should have mentioned that as well as self-administered medication, the QE also does Tysabri - a woman came in for her infusion (?) one day while I was on the clinical trial. Other MS-related treatments are also available from the QE. I’m waiting for an appointment for FES, but I know that won’t be any time soon.

Hi Cheerful dragon I have been referred to Dr Woolmore (any knowledge) I am not used to all the terms you have used. I am very new to this. I was at good hope hospital Julie x

I don’t know Dr Woolmore. I was under a different neuro when I was first diagnosed, but I only saw him once (I think he moved somewhere else).

Disease Modifying Drugs are what you are prescribed if you have a number of ‘clinically significant’ relapses over a certain time (I think it’s two years). Generally you start with injected drugs like Betaferon or Copaxone. If these don’t work, or the side effects are a problem, you may move to another treatment. Gilenya is taken as capsules once a day. I don’t know much about Tysabri, other than it’s given in hospital every few months.

Any other treatments will depend on how MS affects you over time. You may need physiotherapy or the help of an eye specialist, both of which are available at the QE. I can only name treatments that I have needed over the years. I’m sure others can think of more, most of which should be available from the QE.

My neuro is Dr Woolmore - he’s very nice and easy to talk to. The rest of the team at the QE are good too, the MS nurses are very helpful and there is also a team of neurophysios to help with exercises etc. I’m sure you will be well looked after.

Chris

Hi Chris Thank you for you reply. There is so much to learn. I am suffering at the moment so am hoping for some help. Is there anything you suggest I take? List of questions etc etc. Am very apprehensive about it all. Julie x

Hi Julie

You don’t mention the type of MS you have, I assume RRMS, Dr Woolmore and the nurses will guide you through the process of choosing a DMD to suit you and your MS depending how active it is. There are many different drugs available now - some are injected, some are oral and some are infusions given in the QE - the team are really good and will give you lots of info before you have to reach a decision.

I hope you will be seeing someone quite soon as you mention you are suffering at the moment. Do make sure you mention any problems you are having as they can refer you to physio, podiatry, orthotics, bladder clinic, occupational therapy - there is lots of help out there you just have to ask.

I would suggest you consider getting a flu jab, any infections can make MS flare up and you can get a free flu jab from your GP if you have a diagnosis of MS.

Cheers Chris

Hi Chris I haven’t had anyone tell what type I have. When would I find out? How do they decide? What criteria will I need to meet? Julie xx

There are four types of MS: benign, relapsing-remitting, secondary progressive and primary progressive. Benign is where you have no new symptoms and existing symptoms don’t get any worse. Relapsing-remitting occurs when you have episodes (also known as attacks or exacerbations) where symptoms flare up. These can last from a few days to a number of months. After the attack your health returns to somewhere near normal, depending on the severity of the attack. Relapsing-remitting sometimes occurs after a spell of benign MS and sometimes develops into secondary progressive MS. In secondary progressive MS you don’t recover completely after a relapse and disability can gradually increase. Primary progressive MS has no periods of remission, it just gets worse over time.

As for what type you have, it will take time to work that out. Your neuro will need to see how your condition develops. This can take some time. It took more than four years from my initial deposit diagnosis of ‘probably MS’ to be told that I have relapsing-remitting MS.

I have manyou symptoms…constant pins and needles…restless legs which sounds so nonchalant but it is the one that causes the most stress…tremors…weakness in left side if body…drunk walking…dizziness…I can’t write anymore due to tremors etc etc lol Not to mention the EXTREME fatigue. Julie xx

Hi I had my flu jab last week. I am unlucky enough to have epilepsy as well!! My appointment at the Queen Elizabeth hospital is the 29th of November. All my neurologist has given me is Gabentin which does help with the restless legs but turns me into a zombie! lol xx

You could do worse than try magnesium to see if it helps calm down those restless legs, as it is a beneficial mineral. I found 375mg did the trick, but you might need to experiment a bit.

Will do xx