So many things going on, are they all MSA?

[Ollytree]

My husband was diagnosed with msa in may 2019. He has suffered with chronic back pain following an injury at work in 2002. He has been told his condition is 'complex' as we are unsure what is chronic pain and what is msa however pain is treated for the pain apparently. Hes under neuro team an Walton centre and our local hospice.

His current symptoms that are causing him pain, discomfort etc are muzzy, heaviness headache at top of spine into back of eyes, pain in r shoulder and arm and left bicep. Pain burning sensation in left buttock and hip. Heaviness in thighs and tightness in calves into toe.

Any suggestions or anyone suffer similar symptoms with Msa?

Thanks

Ollytree

[Yanno]

Hello and welcome to this forum, I see this is your first post.

Hopefully others will be able to more specifically comment on the pain issues your husband is having. However as a general point I would recommend you discuss things through with your MSA Specialist nurse if you have already contacted the MSA Trust. If you haven't made contact with them, most people in this forum will confirm that they are the best source of information about MSA.

Everyone is on a journey with MSA and they don't all stop off at the same places. Your journey may be entirely different to someone else's. The advantage of talking things through with your MSA specialist nurse is that she will have seen all the manifestations of this beast of a condition.

I keep my fingers crossed as I say this as Jackie, my wife, is currently pain free. She did have severe pain across her shoulders and into her back which she has managed to control through massage and trying her best to keep some flexibility - which is increasingly hard as she progresses.

I hope you get some answers soon,

take care, Ian

[Derkie54]

Hello Ollytree,

This is a common question, but unfortunately people have different symptoms with MSA.

My wife has suffered for many years and they thought it was MS then a few years later they said possibly PD and now the diagnosis is MSA. She has shoulder pain and a few markers that point to MSA. She had a table tilt test and various others and they are pretty certain now.

The thing is the next person may have MSA but a different set of symptoms it's that kind of disease.

One thing we do have in common is that at times my wife will also report an issue and they will say that doesn't sound like an MSA related pain. She had a nasty accident years ago and was knocked over by a skip lorry so some problems will stem from that.

Our thoughts are with you and your husband, I'm sorry this does not help you much but welcome to the forum.

Derek

[Ollytree in reply to Derkie54]

Thanks Derkie, we will contact the MSA nurse as you e suggested

[Kiwimagic]

Hello and welcome to the forum.

My father had MSA and was originally at the Walton centre as there were no specialist for MSA I asked for him to be moved to the care of Christopher Kobylecki who is a Consultant Neurologist at Salford. Emma Saunders is the MSA nurse and they both hold msa clinics there.

Have you been in touch with Emma?

My dad complained of similar things as your husband and every time we thought one thing was getting sorted another problem would arise.

MSA is such a complex and awful disease.

It’s a awful journey for the person who has MSA and the family.

Take time out to enjoy each other and make memories.

Take care x

Ps there is always someone around on this site to talk to. The MSA family are amazing x

[chester2107]

hello and welcome, my dad suffered with neck pain but this was before his msa diagnosis, so might not have been related

he didn’t really complain of any pain at all really , he was only diagnosed at 80 years old and has sadly passed now x

elaine

[IvyRose64]

Hello there, my hubby has been exhibiting symptoms for over 7 years now and we think may have had some for maybe 10 years. One thing thought he has never complained about pain. It's one fo the things he is constantly being asked especially by me but has never experienced any. As others have said however, no two cases are identical I was suggest contacting the MSA nurse or speaking to a specialist.

Take care of yourself.

[TK-67]

I'd agree with others - getting a specialist consultant is key, worth hunting them down, the difference having an 'expert' for mum has been immense. Secondly everyone is very different, mum has pain but this is often down to not moving enough, or too much caredopa which has decreased substantially now.