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Old 09-20-2019, 05:02 AM #1
JohnnyZenith JohnnyZenith is offline
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Default Hello, please can you help?

41 year old male in the UK.

Diagnosed with Sicca Syndrome. The first symptoms were dry eye followed by hypersalivation - drooling, a week later this went the other way. This has levelled somewhat but never 100%. The first symptoms started January 2018. I get fatigue, rashes, and dry skin. My hair is brittle and falls out.

6 months ago I got the first tingling in my thighs.

I have tingling paraesthesia. It is mostly in my legs but I get it in my arms now too, as well as a weird stinging going up my arms. I can get sharp burning stabbing pain in the upper left of my back too. My legs can be very sensitive when wearing certain trousers and wearing jumpers can hurt too. Do I have SFN? Small Fibre Neuropathy? GPs refuse to do any other tests but the standard Nerve conduction test and electromyography, which is totally unrevealing anyway. They have refused to go any further and have suggested nothing. I also have dryness problems and have some sort of Sicca.

I have received little support from my doctors. No support from the private Rheumatologist . The neuro will not see me.

I am deeply depressed and have lost my life. I will soon lose my job if something isn't done.

The symptoms started after I stopped a short course of Finisteride and after sustained stress from a relationship betrayal meaning my new life to be in Spain by the Mediterranean was destroyed.

I have no idea if neurotonin/gabapentin will work and I have had no support to look at whether it would.

Can you help?
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Old 09-20-2019, 03:26 PM #2
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Hi JohnnyZenith

Welcome to NeuroTalk .

Sicca is a common clinical sign of Sjögren Syndrome, which is an autoimmune disease.

The other signs that you have described may be peripheral neuropathy, which can occur in Sjögren Syndrome.

The information in these two links may help you with this.

Sjogren Syndrome: Practice Essentials, Etiology, Epidemiology

Neurologic Complications : Johns Hopkins Sjogrens Center

All the best.
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Old 09-27-2019, 06:08 AM #3
JohnnyZenith JohnnyZenith is offline
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Honestly I think it's time to give up.
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Old 09-28-2019, 04:35 PM #4
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Here's a list of alternatives to THINK ABOUT and Take ACTION too. I don't have your challenge but I work almost 100% with alternatives for my aging and damaged body, I'm 81 and have seen enough...but am doing well ENOUGH.

Reading this list, I realized I don't BLINK a lot, do you?

Alternative Treatments for Sjogren's Syndrome - RightDiagnosis.com

Grape Seed Extract has been my powerful antoixidant for going on 25 yrs and it's kept my eyes in good health. No eye issues, no cataracts etc...

Even starting with Grape Seed Extract COULD help your issue...it's said to be 20X's more powerful than Vit C...Do you take Vit C, it's on the attached list.
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Old 09-28-2019, 06:02 PM #5
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OP: I see Potassium is on this long list, and here in the U.S. the RDA for adults is 4700mg of potassium, either from foods or suppliments, I use both but slip and find my potassium levels falling. So many don't realize the importance of our nutrients.

There is so much on the list that COULD help you,
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Old 02-07-2020, 05:26 PM #6
JohnnyZenith JohnnyZenith is offline
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That website doesn't work for me in my area. I have been told I don't have Sjogrens but have no idea if they're wrong.
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Old 02-07-2020, 06:07 PM #7
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Quote:
Originally Posted by JohnnyZenith View Post
I have been told I don't have Sjogrens but have no idea if they're wrong.
Would it help if you outlined the clinical evidence which led to this conclusion?
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Old 02-15-2020, 05:57 PM #8
JohnnyZenith JohnnyZenith is offline
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Yes, the fact that all my symptoms match Sjogrens and SFN. It at least matches SFN. I always highlighted it all above really. The burning across whole back and worse at the top is terrible. The prickling terrible pain has spread across my whole body. It is constant.
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Old 02-15-2020, 07:53 PM #9
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I posted What Works For Me in the Neuropathy group. Did you see it? On that list is

Grape Seed Extract
Inosine
Sphingolin

Many with PN use Alpha Lipoic Acid and I have off and on.

Since I'm using the HGH homeopathic gel for about a year now the pins and needles is so very limited.

I keep my feet rubbed with Vicks salve and can't be without Topricin for Pain homeopathic.

Being you are in the UK, you have health food stores there, right. And many over there buy on Amazon in your country., There is a lot of help for us.

I can't speak too much about Sjorns and I believe there are members who deal with it here. Do some searches.

We are not doctors but many of us try to help direct people to what is working in their lives.
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Old 02-23-2020, 06:23 PM #10
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Hi, I've dealing with Sjogrens, also known as Sicca, for more than 20 years. Happy to share any help I can. I'm in the US so not sure I can give you any advice about navigating the system in England, but I can give you plenty of advice about meds, things that have helped me, etc.
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