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Worried and looking for help

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Old 07-26-2018, 08:51 AM   #11
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Hi mate
I completely understand how you feel because I also react like you..im quite young to be dealing with this but I tell you one thing googling this issue is beyond our capacity it's not really well understood...im also fearing and scared for me and my families future as I don't know what to do...i have no other medical condition..i have just had a skin biopsy now need to wait a few weeks for the results..if you want to talk just msg me we are both in a similar situation.

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Old 07-26-2018, 01:45 PM   #12
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I am in a similar situation. Pain in both legs (upper and lower) and tingling and pain in my feet since April. I was symptom free for about a month but everything returned and has been bothering me everyday for over 2 months now. I have seen neurologists and other specialist and had pretty much every test, exam and blood work imaginable. Im waiting on a few more results and if those turn up negative Ill be pushing for a skin biospsy, even though both neuros are convinced I dont have SFN. Its starting to impact my quality of life, consuming my thoughts and I cant physically do as much as I could months ago which is concerning. I hope things work out for you, hang in there and keep everyone posted on your status.
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Old 07-27-2018, 11:30 AM   #13
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Chronic inflammatory demyelinating polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. The disorder is sometimes called chronic relapsing polyneuropathy (CRP) or chronic inflammatory demyelinating polyradiculoneuropathy (because it involves the nerve roots).

I was unable to post the link, so know this was lifted from the internet.

This is an autoimmune disease and treated with Immune Globulin for those who reach the diagnostic threshold. Many neurologists do not like IVIG as it has some severe side effects; but with my extensive experience with the drug I have seen many successes.

The main thing is to find a neurologist who has patients on IVIG already. You can call local Specialty Pharmacies and find the IVIG service provider, then ask them who they get orders from. That will help you find your doctor.
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Old 07-27-2018, 01:01 PM   #14
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I saw a neurologist today. He is not ready to diagnose me with small fiber neuropathy. My current diagnosis is 'disturbance of skin sensation.' The doctor ran me through some neuro tests. All were fine, but one did have me worried. The doctor took a pin and poked my finger tips with it. I could feel how sharp it was. However, as he went down my legs I could feel the pin, but it was more blunt than sharp. He didn't seem overly concerned about it. I guess given what's going on in my feet it makes sense that I may have some change in sensitivity as indicated by the pin.

Doc ordered four blood tests today:

ANA by IFA Screen

Folate Serum

SED Rate Westergren

Vitamin B6

The doctor was able to calm me down somewhat. Yesterday, I was a wreck. Like I've said before, at this point it's just a waiting game. I'm trying to get back to my normal self.
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Old 07-27-2018, 04:35 PM   #15
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Some background information for you:

A SED Rate (Erythrocyte Sedimentation Rate) measurement is a non-specific indicator of inflammation. It says nothing about the anatomical site(s) of inflammation nor what the cause(s) of it are.

An ANA (antinuclear antibody) test measures levels of ANA in your blood and which parts of cell nuclei they react with. Some autoimmune diseases (SLE and RA among others) can show unusual ANA results but they are not always very specific. Usually these are followed up with more specific investigations from a clinical immunologist.
Knowledge is power.
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"Thanks for this!" says:
glenntaj (07-28-2018)
Old 08-02-2018, 09:52 AM   #16
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ANA by IFA Screen, Folate Serum, SED Rate Westergren, and Vitamin B6 all came back negative/normal. The folate serum did indicate > 20 mg/NL, but the test result specifically states:

A result of > 20 ng/mL is not necessarily
indicative of a pathologic or treatable
condition: it reflects a limitation of the
test methodology.

Assay reference range: 4.8 to 24.2 ng/mL.
Suitable for detection of folate deficiency.

I've messaged the neurologist, but have yet to get a response. This guy isn't impressing me with his lack of response.

I still get the intermittent burning feeling/electrical impulses in the feet. Again, it's about a "1" on the pain scale, but it's still freaking me out at times. Thank goodness for Xanax to help me sleep.

I think I mentioned that I fell in the tub about six weeks ago. Okay, I fell out of the tub and on to my rear end. There was no pain in my legs or back right afterward nor is there any now. The pain in the feet didn't start until about three weeks after the fall.

I'm SO SO SO very concerned this is going to get worse. Dunno what to think or do at this point.
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feeling, left, normal, vitamin, week

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