MSA medication

[Redjune1]

My husband was diagnosed with MSA in July and was started on Sinemet straight away. In all this time we have noticed no improvement at all. The Parkinson’s nurse discussed it with the consultant and he wanted to stop the medication altogether but she persuaded him to keep him on it a while longer. Are there no other medications to try or even an increase of the Sinemet? I just worry that if he is taken off the medication we will just be forgotten about. As it is he’s never met either the consultant or the Parkinson’s nurse. We are still waiting for him to have an assessment of his needs by occupational therapy and he has now got to the stage where he struggles to get upstairs . I just don’t know what to do about it.

[Paul_and_Sue_Wood]

Hi

My Sue never used it, but I suggest reaching out to Jill Lyons one of the MSA nurses at MSA trust who knows a lot about drugs and other help that is available.

Paul

[AMBD]

My husband had MSA c and was on no medication for it. I understood that if a patient had type P there was medication that may help.

[Redjune1 in reply to AMBD]

We don’t even know what type of MSA Phil has, nobody has told us. I know Covid has a lot to answer for, but not being seen by anyone is just hopeless

[AMBD in reply to Redjune1]

I would contact an MSA nurse for advice on how to proceed. xxx

[1burtonst]

I just know how you feel my husband diagnosed withPD 5 years ago ,but I am convinced he has MSA he has all the symptoms. Had telephone appointment in March.specialist not happy wanted face to face appointment ,its in January we don't know where to turn its hopeless Janet

[Redjune1 in reply to 1burtonst]

Hi Janet that’s exactly how we feel. I suppose we were lucky in that Phil was told straight away that it was MSA rather than PD, but Covid has such a lot to answer for, making it impossible to have face to face appointments. We’re just hoping that we get an OT assessment soon in the hopes that we will get some help. Do you have carers at all?

[1burtonst in reply to Redjune1]

No hes not that bad at the moment .

[Primitivepotter in reply to Redjune1]

We have just started with a carer in the morning to get my husband showered and dressed and it has made a huge difference. A problem shared is a problem halved and it is lovely for him to have patient sweet carers and not the overtired grumpy wife! Jill Lyons has been enormously helpful so arrange to have a chat with her.

[Redjune1 in reply to Primitivepotter]

I’ve spoken to Sarah Pavey, the MSA nurse for this area. She’s been really helpful. I would like to get a carer in to shower and dress Phil but I don’t think he’s very keen. As you said, better to have a patient carer than a grumpy overtired wife.

[Courgettegrower]

I agree with Paul, contact Jill Lyons. Have you contacted the MSA trust, it is a must? My husband has MSA C , no medication for it just some symptom control. The OTs will help with the practical aspects of living with MSA which is actually more important than a diagnosis.

[Diane831]

I agree with everyone else! Join the MSA Trust and get to read their excellent fact sheets and make contact with the MSA Nurse for your area - they are all fabulous!

msatrust.org.uk

My husband was tried on Madopar but it really didn’t make any difference and at higher doses he got side effects and was weaned back off it completely.

I hope that you can get some advice that will keep you going until you see the consultant.

Diane

[chester2107]

i didn’t know there were different types of msa , my dad didn’t have any medication for his , but think some people get diagnosed with parkinson’s first and this is when they may have medication x elaine

[Hidden]

I would go with consultant and MSA nurses on this one, and not the Parkinson's nurse as they are not specialists Kx

[Orla789]

I agree. Jill Lyons is wonderfully helpful . Also ask to be referred to a movement disorder specialist if your consultant isn’t one (or isn’t being proactive). You may need to be assertive though I just suggested it to my neurologist and he did it. Jill would know names of movement specialists on your area . I am amazrd you haven’t had a face to face appointment yet.

[Annietutt]

Good luck as you go forward with this. MSA is a lonely place to be, even with face to face appointments and a diagnosis. I echo what others have said. Our best support came from the neurological physiotherapist and the speech therapist who were both wonderful.

[Primitivepotter]

Hi Redjune1, I am new to this too - my husband has MSA and was previously diagnosed with PSP and before that Parkinsons. I would say that you need to find the number and even better the email address of the Parkinsons nurse and she will be able to organise visits to the consultant, and refer you for extra help. If you cannot contact her then call the District Nurses and get them on board to help you get the assessments that your husband needs. In our case we stumbled across a wonderful OT who fixed us up with some speech therapy, got the right kit in in good time. So keep knocking on the doors until you find someone who will help.

[Redjune1 in reply to Primitivepotter]

Thank you, I will keep pushing to get things done