Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: angeldancer on November 23, 2013, 07:08:21 AM

Title: must have peripheral Neuropathy?
Post by: angeldancer on November 23, 2013, 07:08:21 AM
Ok, until I got on this forum I have been totally clueless about my symptoms.  I tell doctors about the numbness tingling muscle lack of control, crazy pains and the changes in my toe nails.  I get from them that I am not a diabetic.  Well ok.  But what is it?  This forum has been priceless.  But what do I do?

Then I have been reading and reading and I have all these symptoms:

Most commonly, peripheral neuropathy starts in the longest nerves, which are the nerves that reach to your toes. Symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:

Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
Burning pain
Sharp, jabbing or electric-like pain
Extreme sensitivity to touch, even light touch
Skin, hair or nail changes
Lack of coordination
Muscle weakness or paralysis if motor nerves are affected
Heat intolerance if autonomic nerves are affected
Bowel, bladder or digestive problems if autonomic nerves are affected
Changes in blood pressure, causing dizziness or lightheadedness, if autonomic nerves are affected


Title: Re: must have peripheral Neuropathy?
Post by: SjoAmy on November 23, 2013, 11:24:14 PM
This is going to sound odd.....Talk to them.  Let them know that this is bugging you to the point that you are considering getting a second opinion on the matter.  Most, will be a little hurt that you needed to say that to get the proper care, if they have any sense of morals about them.

Then again some might also say, Ya know it might be a good idea to get another set of eyes on this.

Talk and document.

A physical therapist might be a good match. Doc can get documentation and another set of eyes, while PT tries to figure it out.
Title: Re: must have peripheral Neuropathy?
Post by: angeldancer on November 24, 2013, 12:47:33 AM
Thanks Sjoamy!  You are a winner.
Title: Re: must have peripheral Neuropathy?
Post by: Joe S. on November 24, 2013, 06:37:42 AM
I have never thought of neuropathy as a must have, I would prefer not to have it.
Title: Re: must have peripheral Neuropathy?
Post by: SjoAmy on November 24, 2013, 09:37:00 AM
I have never thought of neuropathy as a must have, I would prefer not to have it.

Perspective, people.

Ya know there are a lot of docs out there that don't / won't do the footwork of pathology & diagnosis.
And there are a selected few that will. 

Let me put this in context of Sjogren's syndrome for a minute, instead of peripheral neuropathy:

When I went to my first rheumatologist, he did the work up for SSA & SSB, among other things.  My SSA was 5.0 back then  (now it is 8.0 -- I wish I had that 5.0 back!).  Anything above 1 is positive on that test.  That rheumy got re-verification of what was wrong by other docs & PTs and STILL HAD THE GALL to tell me that I am asymptomatic! 

He doesn't see me when I have to drink fluids more than the Atlantic Ocean to keep my thirst down, he doesn't see or feel the pain in my eyes cuz he isn't the ophthalmologist, who can look thru my eyes and see my damage.  He doesn't know what it is like to not be able to cry because your tears go away like steam.  He doesn't know the joint pain, because Sjogren's hits females 10 x as much as it does men.  I won't be able to come in to the office -- doesn't matter which doc -- if my hip joint won't permit it.

So the tests and the symptoms accumulate.  And you WANT to do something about them.  If you're like me, you learn what is in the books -- medical textbooks -- medical journals -- and you try to put the pieces together yourself.  Sometimes it seems that no one else is but you.  And you want an ANSWER .  The worst thing is to remain in limbo,and some rheumys do that until you are sick enough to fit the classical that time it can be TOO LATE.

ANGELDANCER.....hold on dear one.  Keep learning how to heal thy self.  You deserve an answer and you deserve treatment.  You have had an "Aha!" moment....I had one of those yesterday with my situation.  Now you need to prove the Aha to the docs.

EMG, is a possible test, especially if it is large fiber.  Small fiber neuropathy is harder to diagnose.  Skin biopsy can reveal that if other methods fail first.

Remember the 2-10 minute snapshot a doc gets is not nearly enough to go on.  Insist on time with doc if you have an idea / issue to present.

Take care Angeldancer!
Title: Re: must have peripheral Neuropathy?
Post by: Nat on November 24, 2013, 10:45:36 AM
Wow SjoAmy! So well said!

Hi angeldancer~ I have been making some recent posts on a lack of enzymes in Sjogrens called protease and DNase 1. These enzymes digest dietary proteins. They originate in the "exocrine" pancreas. Research has found that the majority of Sjogrens patients have subclinical (meaning no symptoms) exocrine pancreatic insufficiency.

These enzymes are also responsible for the metabolism of vitamin B12. Research shows that a lack of these enzymes leads to a "cellular" deficiency of vitamin B12. I have been posting lots of research that confirms autoimmune patients lack vitamin B12, due to an inability to properly metabolize the vitamin.

Some of the ramifications of a cellular vitamin B12 deficiency would be autonomic nervous system dysfunction (one of the neurotransmitters that regulate the autonomic nervous system is derived from vitamin B12), spinal cord degeneration, white matter lesions, and peripheral neuropathy. Here is a link to the University of Chicago Center for Peripheral Neuropathy that states a "clear link" has been established between a vitamin B12 deficiency and peripheral neuropathy.

What is important to understand, is this is a "cellular" deficiency that results from missing enzymes. You will not be able to correct this through supplements. You will need to restore the missing enzymes through diet and lifestyle changes. 
Title: Re: must have peripheral Neuropathy?
Post by: Carolina on November 24, 2013, 03:57:27 PM
LOL, how can I find this post series amusing?  Well, I, too, have PN, and it is the worst thing that has happened to me, by far.

Thank god it didn't happen until I was over 65.  At least I CAN just sit and watch the world go by, at this stage of my life. 

The worst thing about PN is that is about 90% of the cases there isn't a dang thing you can do about it.  All the strengthening in the world will not restore your balance, or make the messages between your limbs and your brain anything but confusing garbage that scares the wits out of you and causes you to stagger and fall.

People want to believe lots of things can make a differences (mostly diets and supplements, but also some sorts of imaging and changes in behavior), and the placebo effect is very possible for many conditions.  But I cannot see how the placebo effect could heal damaged nerves.  But I suppose anything can happen, and does happen.

I can deal with what I have, and now that my family seems to accept it, and doesn't try to tell me I'm just not trying hard enough, life isn't as stressful.

My younger son moved in with us last June, and immediately saw in a way that he hadn't before how truly disabled I am.  Our older son has been here for a week, from France, and he also sees what my husband has refused to see.  Both sons confirming my clearly painful reality and meant a great deal to me.

Anyway, PN is no fun.

I am also beginning to suspect that I have small fiber neuropathy in my hands, arms and face.  At least they tingle and burn almost constantly, and the tip of my tongue, and my lips.  I thought it was only part of the flare, but now I see that it is either hanging on, or always there and I just didn't notice!

I don't know about others, but I spend a great deal of time and effort in ignoring my symptoms, suppressing them.  As I've said so often, I didn't realize I HAD the PN until it was profound!  I mean truly terrible.   I just thought I was clumsy and careless and out of condition, tho' I was exercising regularly.  Denial is an amazingly powerful force.

Hugs,  Elaine
Title: Re: must have peripheral Neuropathy?
Post by: SjoAmy on November 24, 2013, 05:30:55 PM
As much as my symptoms annoy me, and I have small fiber neuropathy, I pray that I never ignore them.

Symptoms are warnings that something is wrong with the body.

You would not ignore a fire alarm going off in a burning building.....

Then don't ignore the fire of inflammation in your nerves.

If only to save yourself.
Title: Re: must have peripheral Neuropathy?
Post by: angeldancer on November 24, 2013, 09:53:10 PM
Wow, this was definitely stimulating, mind blowing, and informative.  Some days like today I have strength to fight.  I see my Rheumy tomorrow.  I pray that I have a day like today and can really communicate with him about my symptoms and what is the next step to get some relief.  My concern is that he is going to overlook it because of my cancer.  I will definitely get an answer of help from him or I will ask my HMO to refer me to another one.  I need someone to work on my behalf.  Thanks to all of you for your very informed conversation.  Priceless!
Title: Re: must have peripheral Neuropathy?
Post by: Carolina on November 25, 2013, 05:12:17 AM
Oh, I agree SjoAmy,

Denial is very dangerous, and I don't recommend it at all.

The problem with my denial is that I don't even know I"m doing it.  I have so much going on, especially with pain and joint problems due to osteo arthritis, that I think that I'm highly aware of what is going on.

When I had severe unstable angina (heart pain) I thought it was heart burn!  And since I had a hiatus hernia found on a gastric endoscopy
I was treating heart burn for a year and a half.  All the while the coronary artery called 'the widow maker' was 95% blocked.

It turns out I have a very high pain threshold.  Again, since I have so much pain, I didn't realize that, either.

You are so right, SjoAmy, detailed attention to our bodies is required to accurately assess and describe what is going on for our doctors.
And yet, I still find myself 'lumping stuff together' rather than really noting exactly what is going on.

That is just one of the reasons that this forum is so valuable.  You and others point out things to me that I miss.

Hugs, Elaine (aka Carolina)