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Doc says no SFN, i don't believe him

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Old 08-11-2017, 02:22 PM   #11
bluesfan
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Hi dtaijo174,

A belated welcome to neurotalk - I've been absent from the forum for a while having had other issues to deal with - so just catching up a little here.

To add to the suggestions others have made and going back to your original post - you mentioned that you had been very ill for about a week while on a business trip overseas.

Did you ever get a specific diagnosis of the illness cause? eg, gastroentological, viral, bacterial, parasite etc.

Did you take any antibiotics (or medications other than those you've listed) at the time of the illness or since then? If you can provide the name(s) there may be information available here on neuropathy side effects or others may share their experiences.

Either of these could have singly or jointly contributed to causing peripheral neuropathy. Finding a possible cause can assist deciding treatment options.

Ragtop's suggestions are all great steps you can take yourself without requiring a doctor's input, and will help manage the condition no matter what the cause.

Feel free to ask more specific questions if you want.
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St George 2013 (08-12-2017)
Old 09-13-2017, 01:57 PM   #12
dtaijo174
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Quick update:
Doctor is making me come in again for another appointment. I'm trying to get them to skip the appointment and order the biopsy... So far no luck. My appointment isn't until the end of December
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Old 02-09-2018, 03:40 PM   #13
dtaijo174
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Update:
Finally after months waiting for an appointment i received my results for the skin biopsy and it is positive. Thank you all for insisting I get this done.

I am scheduling another appointment to get some more blood work done. Can anyone point me toward a list of things to test for? I'd like to cover as much as possible.

Thanks again.
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echoes long ago (02-09-2018), janieg (02-17-2018)
Old 07-10-2018, 09:22 AM   #14
Sicabre
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Quote:
Originally Posted by dtaijo174 View Post
Update:
Finally after months waiting for an appointment i received my results for the skin biopsy and it is positive. Thank you all for insisting I get this done.

I am scheduling another appointment to get some more blood work done. Can anyone point me toward a list of things to test for? I'd like to cover as much as possible.

Thanks again.
How are things progressing?
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Old 08-06-2018, 05:12 AM   #15
Burnsie
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Quote:
Originally Posted by dtaijo174 View Post
Cramp Fasciculation Syndrome and Benign Fasciculation Syndrome (BFS) are basically the same thing. They mainly consist of people with lots of twitching, tremors and paresthesia.
I agree with all of you, what’s the difference between BFS/CFS and SFN? It seems to me they are both related to each other in some way.

I’ve decided I will get a skin punch. I want peace of mind and the constant worry gets to me. I have 2 young kids, and I’m the breadwinner… I need to be prepared for the worst. However, I really do not want to get a new doctor since mine is one of the best for SFN. If I have it, I want him to treat me.

As for meds, I was prescribed gabapentin from the first neurologist. It just made me dizzy and tired, so I stopped taking it.

During my appointment with a rheumatologist, I had my blood drawn and tested for a number of things. If it is helpful, I could dig up my results. The only thing worth mentioning was my vitamin D was low (it was winter and I live in the north).

My numbness is real. I severed a nerve in my thumb years ago and my toe feels exactly like that. I can tap a spot on my toe and it zaps pain up the toe where it is numb. Otherwise it is dead to the world on very thin line.

I’ll also check out the supplements on the stickies. From what I have read from older posts, some feel take these has changed their lives. Might as well give it a shot.

Lastly, if I do test positive for SFN, what do you all recommend for next steps? I’m 36 and not diabetic. Surely it is autoimmune. I’ve read about IVIG. Should I be pushing for this?
Hi dtaijo

It'll be interesting to follow your progress.

I mirror your symptoms a bit. All over body twitching was my main symptom in May 2016. This was followed by feet tingling in June 2016 with the occasional all over body prickling now and again.

Twitching would stop if the muscle was activated (maybe start again once relax, or maybe move on to another area of the body).

Tingling very mild.

Not other symptoms or limitations. Self Dx with BFS

About 2 months aga start to worry again about SFN (surely the tingling should have stopped by now). Since then, i've noticed an increase of symptoms, obliviously!

I have randomly found (wasn't look for) and small numb patch on the side of one of my big toes. It cant feel pin prick or temp. Interestingly, like, you also, if i run over the knuckle of the toe, i can "ping" the nerve, and it shots down into the numb patch!

Currently still more than able to live my life normally though
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Old 08-15-2018, 10:11 AM   #16
dtaijo174
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Update

Good news on blood work. I finally got a positive hit. I tested positive for Cryoglobulin with “Trace elements”. My doctored explained that trace meant a low concentration was found (a good thing). He also wasn’t sure which type, but it is most likely Autoimmune related. I’m going back for more blood work in mid-September. I asked about sjogren’s and he said it was possible but unlikely. I have already tested negative for it, do not have the classic dry mouth/eyes symptoms, and I’m a man which makes up only 4% of patients. Prior to that everything has been negative so I’m happy we finally found something. Nervous at the same time, because I know autoimmune is pretty much untreatable.

The bad news is I’m still progressing. My burning pain has now moved to the bottom of both feet. It moves around all the time, but every day I have pain there. I can still do everything, but it is rather annoying. Moving around makes it considerably better. I just got back from a 1 week vacation where I was on my feet for 12hrs each day. No problems but the pain was always lingering.
My dizziness seems to come and go, but I’ve had a bad spell for the last two weeks. I hope it passes soon.
Hands remain unaffected, but I still get tremors in my thumbs. That has been continually improving since my first 6 months of symptoms.
The numbness in my toe has greatly improved, and even completely recovered at one point. It has started to come back this month, but it is still nowhere near what it was 1 year ago. To me this means I am recovering in between flares.

At this point, the worst part of the disease is always being reminded it’s there… slowly taking away my life. Will it be 2 years, 5 years or 30 years before I can’t walk…? It makes it hard to enjoy things when you are always being reminded of the pain and future. Should my wife and I have another child? Buy that big dream house? Or should we play it safe because I may not be able to work… I hate not knowing… One thing I made sure to do, is make my disability and life insurance a substantial amount. I will not be a burden to my family. I just refuse to allow it.
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