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-   -   new event, soo scared. Autonomic sfn? (https://www.neurotalk.org/peripheral-neuropathy/224407-event-soo-scared-autonomic-sfn.html)

canagirl 08-13-2015 11:45 PM

I'm not sure if i have had those inflammation markers tested but I will ask my gp next week. One more thing... Thanks for all the help guys

Neuroproblem 08-14-2015 03:43 AM

Quote:

Originally Posted by Healthgirl (Post 1162364)
Must you have CRP/ ESR levels out of whack to have inflammation?
Also, what ever is causing the inflammation is the culprit, so how can the steroids "put it away".
I know it can in some cases. My husband had horrible shoulder pain that would come and go for a year. He finally went to the dr, they prescribed the medrol dose pack and with in a week he was better and it never returned. This is why he thinks steroids are the answer to everything. I just think with a systemic think that is going after certain proteins or organs, I can't see how it can help.
Having said all of this though, I have just been rejected by my neuro to try steroids again. He still wants to wait. UGH!
I just don't know. I know that I could probably find a GP that would put me on in heartbeat, but I'm afraid because I had all of the symptoms you mentioned after 2-3 days and it was awful.

more often then not, steroids can be considered "putting out the fire", but it never gets rid of the smolder that is left, and can reinflame later. steroids is bad in the long term, as it suppress the immune system, leading to higher rate opportunistic infections, and tumor formation, if used long term.

canagirl 08-14-2015 03:43 AM

Not sure if anybody familiar with physical trauma to nerve... At one acuouncture site it's particularly painful and tender. This site is at he upper edge of my shoulder blades right along left side of my spine. From there I can feel the pain, burning, vibrating and pulsing travel I'm a straight line up my neck into the back of my neck and up into my scalp almost to my forehead. This is giving me ear pressure and pressure behind my eye. Today my eyes were sooo dry and it felt like they were heavy, stiff and hard to move. This spread happened whenmy husband massaged this one sore spot last week. What can I do about this ? How do u get rid of this? What does it sound like? I'm scared if losing my vision or hearing

canagirl 08-14-2015 10:24 AM

Quote:

Originally Posted by en bloc (Post 1162267)
Here's a link to the company that did your skin biopsy (I'm pretty sure you said Therapath did it). Read the last paragraph about Prednisone and acute onset (which is what happened to you).

https://www.therapath.com/tests/skin...ber-neuropathy

It's about as logical as it can get...if the cause is inflammation, then steroids will likely help. Have you had a CRP or ESR lab done to check for inflammation?

En bloc, reading that link again it says some sfn respond to prednisone... What do u think they mean by respond? Stop progressing or help to improve for good? I feel like in terms of sfn it can't progress any further ( bbidywide already) but maybe stop lare fiber progression?

KateKline 08-14-2015 01:25 PM

Cana.....are you saying the trauma is from acupuncture? I hope your dr has answers for you. I have SFN and take Cymbalta and Gabapentin. I was on Ativan but weaned off.....it really helped calm me, but made me more depressed. It is a benzo and I was on it for 7 months! It really shouldn't be taken more than 4 weeks. Let us know what your dr says! Kate

en bloc 08-14-2015 01:39 PM

I think it can help BOTH ways IF the SFN if inflammatory based. It will keep it from progressing, but it also can help it for good if it removes the inflammation. Now the inflammation MAY come back again...it all depends on what originally caused the inflammation.

canagirl 08-14-2015 01:47 PM

En bloc, I see my gp tomorrow. I am going to press him again for strroids. What time length would be a good trial? I've seen a few different lengths suggested. 3-5 days seems so short to have a whole body thing respond, but 3 months seems like a long time.
When people talk about short term and long term steroids what is considered short and long? Are the complications from short term use permanent or reversible? Thanks

en bloc 08-14-2015 04:07 PM

The reason I suggested earlier to try a 5 day course is that any longer requires a slow taper. You can take steroids up to about a week and stop without a taper, but anything after that requires step-down doses. You could end up taking them for 3 more weeks if you have to taper off...and sometimes that taper can be uncomfortable (like withdrawal). Also, you should know in a week if it will help (if you take 40-60 mg a day)...even if you just get partial results. They have taper packs that run longer than 5-7 days, but they incldue the taper as part of the dosing...like 60mg for 2 days, 40 mg for 2 days, 30mg for 2 days, 20 mg for 2 days, 10 mg for 2 days, 5 mg for 2 days, then stop. There are other variation of this type of dosing as well.

Most common short term side-effects include insomnia, weight gain (not much for just a week, but you might retain some fluid), and stomach upset (take with food). These side-effects go away when you stop taking it.

The long term use side-effects can include significant weight gain/increase appitite, insomnia, anxiety and/or mood changes, increase in blood sugar (to the point of steroid induced diabetes), bone loss (osteoporosis/osteopenia), thin skin, easy bruising and even hypertension. These problems (especially bone loss) can be permanent even if you stop the medication.

stillHoping 08-14-2015 04:54 PM

Quote:

Originally Posted by canagirl (Post 1162260)
The neuro just flat out said no because it doesn't help sfn, same with ivig. I'm going to try to find some literature that says it does and present it to her

My neuro recommended on IVIG for SFN that is caused by autoimmune disorders and they referred me to the following papers.
Prednisone is cheap, but IVIG is expensive and it won't be easy to get it without a diagnosis of an autoimmune disorder.

2011, Efficacy of intravenous immunoglobulin for small fiber neuropathy associated with sarcoidosis.
Parambil JG1, Tavee JO, Zhou L, Pearson KS, Culver DA.

2009, Extreme efficacy of intravenous immunoglobulin therapy for severe burning pain in a patient with small fiber neuropathy associated with primary Sjögren's syndrome.
Wakasugi D1, Kato T, Gono T, Ito E, Nodera H, Kawaguchi Y, Yamanaka H, Hara M.

(I wanted to add the links to the abstracts of these papers, but I had to remove them from this message beacuse I am new on this forum and can't post links. If you don't find the papers I can send you by PM or email).

EnglishDave 08-14-2015 05:05 PM

Quote:

Originally Posted by canagirl (Post 1162503)
Not sure if anybody familiar with physical trauma to nerve... At one acuouncture site it's particularly painful and tender. This site is at he upper edge of my shoulder blades right along left side of my spine. From there I can feel the pain, burning, vibrating and pulsing travel I'm a straight line up my neck into the back of my neck and up into my scalp almost to my forehead. This is giving me ear pressure and pressure behind my eye. Today my eyes were sooo dry and it felt like they were heavy, stiff and hard to move. This spread happened whenmy husband massaged this one sore spot last week. What can I do about this ? How do u get rid of this? What does it sound like? I'm scared if losing my vision or hearing

Canagirl,

Another spread and further deterioration after a massage when you know from past experience what they do to you?!?

I don't know what to say.

Dave.

canagirl 08-14-2015 05:21 PM

Quote:

Originally Posted by EnglishDave (Post 1162675)
Canagirl,

Another spread and further deterioration after a massage when you know from past experience what they do to you?!?

I don't know what to say.

Dave.

I know... It's was just a tiny area half the size of my palm. I was having sooo much pain and its concentrated in in a tiny spot so I thought it couldn't hurt to rub out just that spot


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