Unsure diagnosis

[mthteach]

Well our trip to the specialist at UAB yesterday was interesting. The doctor said my husband might have MSA. He is sending him to an MSA specialist. I have to start all over again and learn about MSA. I guess it would be ok for me to stay in this group since not all on here have PSP. I'm not sure which is worse the MSA or PSP? Thank all of you for your advice over the last year.

[abirke]

Like I just said in the last post, keep talking to us.....I wonder how many of us here are misdiagnosed with yet as rare of disorder as PSP....It doesn't end!!!

AVB

[sammy90210]

Sorry to hear that - I am not sure either - my dad has PSP, which means his cognition is impaired - with MSA, I think cognition stays relatively better - which means the patient is much more aware of the pain and suffering he is going through.. I hate to say this, but seeing my dad like this it's important: talk to your neurologist and to other caregivers abd please understand all the stages in detail and make sure you take an informed decision on different medication and the PEG tube specially, which may be inserted when a patient cannot eat or drink - a relative of mine had MSA and she was on a PEG tube and developed bed sores and had other horrible ENT, stomach etc problems - she was in this vegetative state for 9 years and I cannot imagine a fate worse than that...

[Chris_F in reply to sammy90210]

Hi Sammy

Yes, either prolonging life where there is little or no quality of life, or prolonging life for the sake of it then, is questionable in my book.

Hugs 'n' all that

Chris F.

[NannaB]

I've just looked up MSA and there doesn't seem to be much difference in the symptoms that my husband has. The description could gave been him except it didn't mention eye movement problem, the Supranuclear bit. Please stay on the site. It will be interesting to hear how things differ/ progress.

My hubby has had a PEG now for 3 weeks and in that time his skin has improved no-end. He still eats but he also had 2 PEG feeds a day which give him extra vitamins and minerals. I'm not saying he won't get any bed sores again but after originally thinking I didn't want him to have a PEG which could prolong life, it has improved the condition of his skin so much and knowing he no longer has painful open sores, it has made me feel much better knowing he is comfortable sitting again. So I'll never say never again (well I'll try not to).

.

[Amilazy in reply to NannaB]

NannaB glad to hear your hubby improving with the PEG, especially the reduction in skin problems. Do not be afraid to increase feed if he starts to choke on real food (not liquid bottle feed). M certainly has not had any weight loss or aspiration in the year since PEG started. M is happy with PEG but she was a bit aprehensive initially but quickly realised it helped both her and me.

Best wishes Tim

[NannaB in reply to Amilazy]

Thanks for this Tim. It's very encouraging to hear your positive comments.

X

[jzygirl]

When we first saw the neurologist when Brian was diognosed with psp i did ask about msa because i knew it was more then just parkinsons. And he said that on the scale it goes

parkinsons......... msa.......... psp....... cbd....... motor neuron

He said that they all come under the same umbrella and a lot of symptoms overlap. It all depends on where the tangles tangle or the cells die as to what symptoms come first or are the most troublesome.

He also said they are all a personal desease as no two people are affected the same way or in the same way. There are certain markers that will eventually say what one it is.

Hope this helps you understand it a bit better. Janexx

[mthteach in reply to jzygirl]

Jzygirl,

That is what the neurologist said about the PSP and MSA. He said that the eye movement that PSP patients have has not developed in my husband. He said by now my husband should be having vision problems if he had PSP. Do all PSP patients eventually have vision problems?

My husband does not have blood pressure problems or the uncharacteristic social behavior that MSA people have. He is very quiet matured even before he got sick.

[Amilazy]

Hi mthteach MSA must be classed as similar to PSP as a couple of research groups combine CBD/PSP and MSA in gathering data. As with PSP MSA is a degenerative condition with similar progression. Therefore I would say please keep reading this site and asking questions or experiences including the need to let off steam we all understand as Carers the need to have someone to let off steam at.

Best wishes and hope the changes in meds work Tim

[Jbpractice]

My brother was diagnosed with MSA and while some of his symptoms were definitely MSA, he also had many of the same symptoms of PSP. My husband and I were his caregivers and truthfully, I learned more about his care from the good people on this site than I did from doctors and other MSA support groups and websites. Please continue with this page - these people are amazing. I haven't posted much but I would like to thank all of you for your honest posts and experiences. You helped me so much during the hardest time of my life. Love to all of you.

[Yvonneandgeorge]

Yes please keep posting, good to hear all different things x

[laroux]

UAB? university of Alberta? Alabama? I ask because I am in Alberta. Anyway, do we ever really know? My partner has PSP, or so we think. I'm not sure if that is what it is or not. All of these diseases are very closely related, and I've decided it's probably not worth stressing over an accurate diagnosis. Before Bob was diagnosed with PSP, I had done my own research and came to the conclusion he had either PSP, CBD or MSA. That's just how similar symptoms are. Anyway, you may as well stay with a group you know!

joan

[mthteach in reply to laroux]

UAB is in Birmingham Al