Result!!! (I think)

Primary progressive MS
1

I went to see a Rehabilitation consultant about 3 months ago. I made a list of things to ask (as suggested by members of this site) and I now fee that things are happening. The consultant wrote my GP a long letter and amongst other things said that I should have another assessment by a neuro consultant.

(I was dxd 20 years ago as Benign MS. Had another appt with Neuro consultant 7 years ago when things went a bit downhill). Now my symptoms have gone over the cliff I feel another assessment is due as I am on no medication and my walking and balance are really bad and fatigue hits me after a very short time of activity. eg having to rest after shower etc.)

Anyway my GP decided it would be a waste of time seeing a neuro consultant (3rd time he has refused) and thought that I may be anaemic so sent me for a blood test. (Came back negative). I went to a neuro physiotherapist who gave me exercises and was very helpful and also said she would send a letter to my GP (copied to me) saying I would perhaps benefit from fatigue medication and a reassessment.

I saw my GP on Monday and he says he will write to Neuro consutant for an appointment - yippee - he also gave me some Amantadine tablets for my fatigue. Obviously I do not know if these will help me - but feel that it is a step in the right direction. I also have a new 4-wheel rollator to help me round the house and garden, etc. This arrived yesterday and has already made a big difference to me.

So I am now doing exercise for my walking, balance, have lost a couple of pounds, so can now feel my core muscles working again. I am on medication - hoping it will help fatigue - and a new rollator to help me move around. So I feel in a very positive frame of mind at the moment and thought I would share this with you.

Hope everyone else is OK - certainly a lot cooler today which should help us all.

Jackie xx

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Jackie I’m really pleased for you, a definite step in the right direction. I can’t remember whether you had an Occupational Therapist, if you haven’t it’s definitely worth enquiring about one. They are fantastic, a real asset. I was disgusted that you didn’t have a Neuro, especially as you have a dx of ms. Hopefully this one will be on the ball and get everything sorted out for you to make your life easier.

Thanks for letting us know and please keep us posted with updates, especially about your new Neuro. You must be so relieved, well done for pushing your gp. Take care.

Cath xx

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Hi Jackie

I am very pleased to hear you are getting the help you deserve, it sounds like you have been fobbed off too long.

Take care,

Wendy x

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Hello Jackie,

Like you, i’ve had only occasional appointments with the neurologist. I’ve been om amantadine for at least 10 years now but I thinl it’s stopped having any affect. Sometime soon I will attempt to get a neuro appointment for a host of things. I’d say contavting youy local authority for an OT assessment is essential. But beware, they move at the pace of a sloth. (Understaffed local cuts etc). Keep us informed.

Best wishes, Steve x

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Hi frothy, great to hear your finally on the road to getting what you need.

Pauline.

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I found rehab really helpful too

Sonia x

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Hi Jackie,

Pleased to hear you are getting more help, a step in the right direction!

Nina x

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Hi Jackie glad your getting some treatment, hope all goes well. The occupational therapist can help with home equipment and adaption mine have been marvellous over the years.

Don

I would send you some smiley flowers but they are no longer on the smilies so imagine a smiling bunch of flowers from me.

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Thanks Don - I have put them in water and they have cheered me up at this time in morning.

Jackie xx

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