Hello: I was diagnosed with MSA In... - Multiple System A...

Multiple System Atrophy Trust

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HollyBee51 profile image
17 Replies

I was diagnosed with MSA In 2012 and have been learning more about it since then. I look forward to learning what insights this group has to share.

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HollyBee51 profile image
HollyBee51
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17 Replies
Yanno profile image
Yanno

Hello Holly. Welcome to our community and as we always say ' sorry you have to be here but you are very welcome'. I hope you find our group to be friendly and talking for Jackie and myself we have found so out much about Jackie's condition from others through talking things through with others in the same situation.

Take care, Ian

Rankin63 profile image
Rankin63

Hi Holly and welcome to the community. I also was diagnosed with MSA-C in 2015 and so far am mainly bothered by my balance and jumpy legs, but I think I am in the early stages of the illness. I am on a gluten free diet and find that I have more energy and am not so tired.

I also don't have the same reflux or indigestion. I realise that everyone is different but these things seem to help me. Maybe worth a try !.

My physiotherapist has given me exercises to do that are relevant to me and concentrate on the core of your body. I hope this is helpful.

Good luck with your illness. Mina

HollyBee51 profile image
HollyBee51 in reply to Rankin63

Hi and thank you for the information. My MSA is further advanced than yours it seems. I am currently getting accustomed to being in wheelchair as my balance and equilibrium are horrible. The symptom That bothers me the most at this point is the head drop. My head is almost always practically locked against my chest which interfered with my inside line of sight , Meaning that I can’t see who I’m talking to or where I’m going. I have been having Physical and occupational therapy in attempt to correct this but progress is very slow and intermittent. Also my speaking ability is greatly affected as my voice has softened in volume, I stutter and can’t find the words And often my words are so garbled that people have difficulty understanding what I’m trying to say. Have you had any of these symptoms?

Cory0407 profile image
Cory0407 in reply to HollyBee51

Hi Holly

You sound like you are at the same stage as my brother is at the moment. He was at his consultant appointment last Thursday and they are now looking into equipment for him to communicate with us.

I have found this group hugely supportive and greatly knowledgeable. Les has had recent episodes in hospital which have been quite hard emotionally and physically for us all. I have had invaluable advice and help from these guys here with some of the things the hospital struggled with.

Corinne xx

SamanthaMSAT profile image
SamanthaMSATModeratorStaff in reply to HollyBee51

Hi HollyBee,

The neck drop you describe is called antecollis, where the neck muscles become flexed forward with dystonia (an increase in muscle tone) and as you say it can affect vision, speech & swallowing. For comfort, you may find the bean bag neck cushions helpful; also lavender wheat bags that you warm in the microwave are soothing. You can use Ibugel up to 3 times a day, providing you are not asthmatic, (available over the pharmacy counter) which is an anti-inflammatory and can help with pain. Most people don't find soft or hard collars comfortable, but it is worth discussing this with your Physiotherapist. In some cases, botox injections can be helpful, but you would need to discuss this with your Neurologist; as depending on which muscles are involved, it can make swallowing more difficult.

Regarding your vision, we have some prism glasses at MSA Trust HQ, that reflect your vision upwards, helping you to see who you are communicating with, to watch TV etc.

If you contact the office, Louise will be happy to post you a pair to try.

Kind regards,

Samantha, nurse specialist, MSA Trust.

HollyBee51 profile image
HollyBee51 in reply to SamanthaMSAT

Thanks for the reply and the advice . I have tried several collars both hard and soft and none. has been effective. The cervical-thoracic orthosis was closest to helping me for awhile (I called it my Storm Trooper outfit) but the biggest problem with it,,as with

all the others is that it provides support to the head by pushing up on the chin and jaw whereas I need support for this from the top(ie:by holding my head back by the forehead. I haven’t found Nd a brace or a collar that is both strong enough to hold the weight of my head and flexible enough to allow me the to turn my head left, right, up and down. I had a power wheelchair made for me and they built in a headband that allows my head to, be attached to the headrest,but it easily slips off the top of my head and requires constant adjustments. But at least it holds my head up so I can eat , which is otherwise a huge challenge. If you know of something more appropriate, please let me know.

About the prisms, would you be able to send them to the States and, if so, at what cost.? I’m thinking maybe they would help.,

HollyBee51 profile image
HollyBee51 in reply to SamanthaMSAT

Samanth

SamanthaMSAT profile image
SamanthaMSATModeratorStaff in reply to HollyBee51

If you contact the MSA Trust and ask they might be able to post you some....

support@msatrust.org.uk

Kind regards,

Samantha.

HollyBee51 profile image
HollyBee51 in reply to SamanthaMSAT

Hoew

HollyBee51 profile image
HollyBee51 in reply to SamanthaMSAT

If o

HollyBee51 profile image
HollyBee51 in reply to SamanthaMSAT

HiSamantha

HollyBee51 profile image
HollyBee51 in reply to HollyBee51

Hi Samantha

I’m still here-still with the same symptoms -only worse than before. I am interested in the prisms and would like to give them a try . Who can I contact and at what address to get more information on them ?

Rankin63 profile image
Rankin63

Thanks for your reply. I have not had any of your symptoms so far and hope it stays that way. I hope that the exercises you get from the physio do some good. The speech problem doesn't sound good. I generally only get a bit slurry when I am tired. Let's hope that your illness doesn't progress too quickly .Mina X

FredaE profile image
FredaE

Yes, we are sorry you have to be here, but welcome and please make use of any help and information we can give you. Ther is nothing you cannot ask aboout andnothng we won't share with you if it helps

I have been silenced for a week because I made the mistake of trying to change my internet provider. and I have been tearing my hair out

unable to communicate.

It is the Hertfordshire Support group at 2.pm this afternoon at the Hospice of St Francis in Berkhamsted. and I have been in touch with Louise at HQ by carrier pigeon. We'd love to see you if you are within reach

Must get the cake out ready

FredaE

HollyBee51 profile image
HollyBee51 in reply to FredaE

I’m having a problem with the website especially with replying to messages. A few days ago, I was in the middle of writing a reply to your message when my text disappeared but I couldn’t find it. So I abandoned it.. And now I’m replying again and hopefully this one will make it to you.

I would have loved to have come to the meeting but unfortunately (or fortunately as the case may be)! I live in Florida and the commute would be a little long .!! 🙄

FredaE profile image
FredaE

I think you might have found the weather here a little trying as well. We had a good meeting with about 6 of us.

The msa Trust in London which deals with the UK, will also give advice by email to people from all over the word who may have no support group and nobody to turn to. We know that just being somewhere with people who know what it is like is really helpful. We have a lot of support groups (about 30) meeting all over the country about 3 times a year and of course we don't expect large numbers. We used to go to a Parkinsons UK meeting at one time with over a hundred other people but Pd is not rare

Websites always gobble up messages. Usually when you have spent ages trying to find just the right words. They must go somewhere but I dont know where. At the end of the Univese they will be found in a great heap under some celestial sofa

Take care and look forward to hearing from you again

FredaE

joe45 profile image
joe45

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