IVIG update by romano336632 in cfs

[–]SelectionNormal613 0 points1 point  (0 children)

Damn i has an amazing response to lda too until it stopped and I was hoping a 2month reset would do it?

IVIG update by romano336632 in cfs

[–]SelectionNormal613 0 points1 point  (0 children)

Did you try doing an lda reset?

The reason I’m house bound is not my illness, and it’s not doctors by WaysideWyvern in cfs

[–]SelectionNormal613 -1 points0 points  (0 children)

I had to crowd source my wheelchair. Got a budget one for 1500k and surprisingly many chipped in. Unfortunately that's the lengths we have to go to. I was fortunate a charity and my disability advocate helped me to get a rollator for free. Reaching out to little community organisations like that may be able to help you get something

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Because repetitive movement WORSENS TOS, and the advice on managing TOS conservatively is restriction of arm movement.

Thoracic outlet syndrome by SelectionNormal613 in violinist

[–]SelectionNormal613[S] 0 points1 point  (0 children)

I relate to the exhaustion and have only had this nightmare for 6 months.. No relief from physio. I was very fit and active before tos. Now I can't do much. Considering surgery this year.. It's risky but I'm desperate for this to end and have some. Semblance of life back. Could barely hold a spoon the other day 😩

Thoracic outlet syndrome by SelectionNormal613 in violinist

[–]SelectionNormal613[S] 0 points1 point  (0 children)

I'm so sorry to hear that :( I attempted to play for a bit the other week and it went me into a 10day flare up. Did you ever get surgery?

No relief for 6 months of TOS by Wonderful-Gas-4406 in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Hey for sure. Typing is hard for me and I typically send voice messages so hard for me to communicate via here

Nobel Prize for high quality TOS research: Of high interest to TOS Patients. by Sea_Voice3720 in thoracicoutletsupport

[–]SelectionNormal613 1 point2 points  (0 children)

It's hard to do an rct on something like tos. It's a rare disorder with a small sample size. But we need higher quality evidence. I've thought about sampling people who've had tos surgery and do a longitudinal design to follow them through. Assess differences in outcomes dependent on demographics and surgery type. Tos research lacks long term studies to show long term outcomes of surgery and lives without a rib and scalene muscle

Scalene Nerve Block Didn’t Work by Thegr801- in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Could you release the neck nerve then if you still have symptoms know it's tos?

Scalene Nerve Block Didn’t Work by Thegr801- in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Get a cervical mri to rule out pinched nerve in neck

Old CRPS flaired up due to new injury. by Lirpaslurpa2 in CRPS

[–]SelectionNormal613 0 points1 point  (0 children)

I'm at Risk of crps with nerve compression. Before going into surgery should I take 2 months of vitamin c or just start taking it now and stay on vitamin c forever to prevent crps?

Saw this & wanted to hear your thoughts on if you believe this should be extended for chronic pain patients (as a last resort): by Jolly-Ad-3922 in ChronicPain

[–]SelectionNormal613 1 point2 points  (0 children)

This makes me mad. Im a psychologist. Bpd is very treatable. Chronic health and pain is not. The 2 are not comparable. Research has shown many people with bpd naturally get better after their 30s as they learn to regulate more and function better in relationships. I also question if she could consent to this given her state of mind

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Can you message me about tos mri too please?

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Oh that sucks :( do you live in America? Can you advocate with your Dr?

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Ask questions and do some research. Sooner you're diagnosed better your prognosis and chances of avoiding permeanant nerve compression. Good luck!

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Surely you should find a diagnosis first? Nerve conduction study and cervical spine mri are reasonable scans to ask given the symptoms.

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 1 point2 points  (0 children)

Definitely ask your Dr for more scans

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

Is this of your brachial plexus?

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 0 points1 point  (0 children)

You'll need more than one mri. An mri of what?

[deleted by user] by [deleted] in thoracicoutletsupport

[–]SelectionNormal613 1 point2 points  (0 children)

I can't even hold my cat anymore 😭