Dysautonomia: "The finger wrinkling test can be used as a screening test before tilt table testing"

pattismith

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That's amazing, my fingers wrinkle perfectly and quickly now, after less than 10 min in the hot water bowl!

I think Methylprednisolone is really doing well for me: After weeks taking it , my cardiac arrhythmia has mostly improve, my pain, headaches, autonomic neuropathy, everything seems to resolve….It's just unbelievable :)




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7 september after a 30 mn hot bath

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I think Methylprednisolone is really doing well for me: After weeks taking it , my cardiac arrhythmia has mostly improve, my pain, headaches, autonomic neuropathy, everything seems to resolve….It's just unbelievable :)
Will you be taking this on an ongoing basis?
 

pattismith

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Hmm, maybe you have small fiber neuropathy only affecting the the lower extremities now?
this is my hypothesis too... I have a date with a neurology reference center to check for SFN in August, so they may have the answer....or may not if everything resolves before that day ( under my methylprednisolone treatment)...:whistle:
 
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this is my hypothesis too... I have a date with a neurology reference center to check for SFN in August, so they may have the answer....or may not if everything resolves before that day ( under my methylprednisolone treatment)...:whistle:
may i know why you take prednisone? im confused cause you said its for arrythmia.

anyway, i have ANS issues/symptoms
but my skin reaction has been so sensitive usually from washing hands/disease my fingers got wrinkles, patches and looks bad. i thought the wrinkles isnt normal cause other normal people fingers are just fine. but i also got immune, autoimmune problems so maybe its from those issues
 

pattismith

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may i know why you take prednisone? im confused cause you said its for arrythmia.

anyway, i have ANS issues/symptoms
but my skin reaction has been so sensitive usually from washing hands/disease my fingers got wrinkles, patches and looks bad. i thought the wrinkles isnt normal cause other normal people fingers are just fine. but i also got immune, autoimmune problems so maybe its from those issues
Do you mean you have early aquagenic wrinkles? Cystic Fibrosis is one possible cause for this condition.
How long does it take for your fingers/palm to wrinkle in warm water, do you know?
 

pattismith

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My fingers stopped wrinkling again, whatever the time I keep them in water. I became aware of it two days ago on November 1th.

I stopped taking corticosteroids on October 11th and had the flu vaccine shot on October 13th.

I started to feel arthralgia 5 or 8 days after the shot...

Probably an auto-immune problem....


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My fingers go from swollen to wrinkled and back again all day long. I don't have to submerge my hands in water to get wrinkled.
It's been like that since I became I'll. And I know we are many with on and off wrinkled fingers and toes.
When I have been in bed for some hours (like a night ), my fingers are ok and I don't freeze. But when going to bed, I have to endure an hour of freezing cold extremities with wrinkled skin before it stabilizes. Under that time I also have pins and needles pain. I do really think that it has to do something with orthostatic intolerance in some way.

This morning I went downstairs to the bathroom and up again. Before I went down, my fingers was swollen, and the attached picture shows how my fingers looks 30 min after I crawled back to bed(sitting). My fingers was much more wrinkled right after I came upstairs, than in the picture.
20201103_091340.jpg
 
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After a 5 minute sitting shower my fingers looks like the attached picture. My fingers gets wrinkled almost immediately with contact if water.
20201103_202211.jpg

But like I mentioned in the above post. I have wrinkled skin on my fingers and toes without getting into the water, just from a extortion of any kind. Does any of you experience this too as well as getting wrinkled from water?
 

ChookityPop

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Here is my fingers 5, 10, 15, 20, 25 and 30 minutes in. What do you guys think?
 

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Mary

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@pattismith - since the methylprednisone helped you so much, I wonder if licorice (real licorice which has glycirrhizin and not the candy) might help? See Can active components of licorice, glycyrrhizin and glycyrrhetinic acid, lick rheumatoid arthritis?

One of my sisters takes prednisone for rheumatoid arthritis and I know there's a relationship between steroids and cortisol and inflammation, though I haven't taken the time to try to really understand it. Anyways, there are some articles which indicate that licorice might benefit those using steroid therapy,
 

Mary

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I think I already tried licorice but couldn't tolerate it because of hypokalemia
What about supplementing with potassium - e.g., methylfolate caused my potassium to tank very quickly due to refeeding syndrome (I know, a different mechanism for hypokalemia than that caused by a steroid). Anyways, I started taking potassium gluconate and titrated up to 1000 mg a day (in divided doses) over a couple of days and the hypokalemia went away. I have had to keep taking it, it's been 11 years now, but it works for me! An alternative to a supplement of course is high potassium food, which can be difficult to get enough. But low-sodium V8 or other vegetable juice is an easy way to get a lot of potassium without a lot of calories or sugar.

If the licorice was able to help you like methylprednisolone did, it seems that it might be worth adding in more potassium.

Thiamine helped my energy quite a bit, but it caused hypophosphatemia, causing severe fatigue (refeeding syndrome again). But once I figured out the problem it was easy to deal with, and I was able to keep taking the thiamine.
 

kangaSue

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Here is my fingers 5, 10, 15, 20, 25 and 30 minutes in. What do you guys think?
Are you currently taking a nitric oxide donor as the improved blood flow from these can influence the result?

I would venture the opinion though that in comparison to the images shown in the Pubmed paper for 'normal wrinkling' in a healthy subject, your fingers are a bit lacking in the same degree of wrinkling at the different time points.
( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892617/ )