MSA. How to help with neck pain

[MaggieMee]

Hi, my brother in law has MSA. We only got his diagnosis 2 years ago but he is suffering symptoms for almost 6 years now. It is such a horrible disease and we are just trying to support him as best as we can. I would really like to find out as much as possible about MSA. I found this support group and am so happy about it.Thank you

[thedjsupreme]

I an sorry for your troubles. I would suggest good hydration and get in whatever movement you can, regular massages unless you have been told differently. Keep his brain alert.

[esj20]

Hi there

As always, the MSA trust is the best and your MSA nurse.

regards

Alec

[chester2107]

yes definitely contact msa trust , strangely my dad had neck pain before he was diagnosed, makes you wonder if it’s a symptom

my dad would never take any medication

maybe a neck massage x

[Yanno]

Hello Maggie, Others have mentioned getting touch with the MSA Trust. Pain in the neck and shoulders can be a sign of blood pressure issues and the Trust have a very useful factsheet here msatrust.org.uk/wp-content/... . You will see it's referred to as coat hanger pain. I hope this is useful.

Take care, Ian

[Morganthreewheeler]

They call it coat hanger pain and it’s caused by high blood pressure which happens when lying down. Sitting or standing reduces the BP so this may help but you should consult the MSA Trust for some ideas on how to tackle the pain

[MaggieMee]

Hello everyoneFirst of all thank you for all the replies to my post. I am new in this group and I was truly humbled to read everybody's journeys and experiences with MS A. Thank you for sharing. This is truly the first time we don't feel so alone! My brother in law lives right beside us and as he is on his own we caring for him now. It took years for us to find out what was wrong with him....many many trips to doctors and specialists and nobody had any answers. He is now peg fed, has almost lost his mobility and speech and at present is hospitalised due chest infections and we almost lost him when he took some serious ceasures. His neck pain is worse when he is sitting as he is very stooped over and cannot hold up his head. We were wondering why a neck brace has not been suggested at any stage....

Thank you for all your suggestions. I have contacted the MSA trust and this has already given me more information in just a week than all the years visiting doctors and a specialists.

I am so grateful for all of you who are keeping this group going and for sharing❤️

[iPad4]

I suffer from severe neck pain however on a recent visit to my GP he prescribed me, 5mg of Amitriptyline to be taken nightly and 2mg of Diazepam to be taken 4 times a day. As a result my neck pain has gone.

[MaggieMee in reply to iPad4]

Thank you for this. I am not very sure what medication Tony is on right now as he is in hospital since the end of November. I will make a note of this. Thank you for sharing

[Reader103]

hi Maggie, I also get neck and shoulder pain. Apparently it is called coat hanger syndrome and is common with MSA

[MaggieMee in reply to Reader103]

Sorry to hear this. If I may ask....is there anything that eases the pain for you?

[Reader103]

unfortunately not really, just exercise and pain killers to ease it a bit

[Lassie1331]

Sounds similar to my husband. We noticed changes as much as 8 years ago, like balance, unable to easily place things down. After pressure for me he went to GP who initially thought Parkinson’s and referred him to neurologist. It was many scans later over a two year period when we were told it was MSA. This took a lot of time to accept with many tears. We are now at the stage where he is no longer mobile and his speech is mostly unintelligible. Also very noisy breathing. Fortunately he is still eating though sometimes has difficulty in swallowing therefore he still looks much the same. It is a horrible illness but we have learned to take each day and deal with the problems as they arise. This forum is good to share the problems and find you’re not the only ones suffering.