YES! getting testing and medications for my Neuropathy!

[Carolina]

Dearest Sjogren's Angels,

So, at last I'm pursuing my autonomic neuropathy (dysautonomia), as a result of all the information and support from so many wonderful people here.

I wrote to my neurologist, and THIS IS his reply only two days later:

1. There is a clinic that evaluates for the POTS and other conditions at Duke in Durham, NC (tilt-table testing, etc.) and I can refer you if you would like, just let me know. They would see you in the clinic first, then determine what testing to perform thereafter.

2. I think gabapentin (Neurontin) would be a reasonable choice to consider for neuropathic pain, and usually it is started at a low dosage and slowly titrated up to a total daily dosage of 1800-2400 mg/day.

Let me know if you want to start a slow escalation of this medication and to which pharmacy I should send it to and I will provide you with the initial start.

So tests and Neurontin.  I've taken this type of medication, for a 5 year period, so I know I can tolerate them.

They actually calm me a bit, which is nice!

I will keep you all posted.   Just want to see 'what's what' since "inquiring minds WANT TO KNOW".

Hugs, stay tuned, Elaine

[dryinOhio]

Great news! Thank you for sharing and good news is especially refreshing to see!

[Suslew]

Fantastic!  That is great news!

[Chris]

Wonderful news!!good luck!!

[Jasper]

That is really good news. Hope they work for you.

[anita]

Did he give you an idea of what tests will be included?  The typical autonomic battery includes tilt table, QSART, holter monitoring, 24 hour BP monitoring, and gastric empty test (only if the patient has any GI complaints).

Of course, tests are ordered based upon each patients symptoms.

[Carolina]

Hi Anita,

He only mentioned " Duke in Durham, NC (tilt-table testing, etc). "

But I will have an evaluation first, so the types of testing will be determined at the clinic, I imagine.

My doctor and I haven't focused at all on the autonomic part of my problems.

One of his 'issues' is that I don't test positive for any autoimmune conditions, and I don't think he really 'gets' that my basic immune system is doing the damage, NOT autoantibodies. 

But at this point he trusts me and knows that what I say I'm experiencing is real, and worth pursuing.

He definitely gets that I'm a ZEBRA.  He's never had another case of copper deficiency, Anita, and he's a big deal expert.

So, this will be interesting.   I find almost all new experiences to be interesting, because I have a high pain threshold and have always been adventurous.

Hugs,  Elaine

[anita]

I understand, but your immune deficiency is likely WHY the autoimmune tests are not showing the markers.  But the process of your immune system doing the damage IS autoimmune in nature, so autoantibodies are the culprit in the end.  Your defeciency just doesn't define the autoantibodies like some other patients...not to mention that 40% of those with Sjogren's are sero-negative anyway (even with a working immune system).

They will likely do an evaluation (like you said) and then select the testing based upon your symptoms.  If it's any consolation, none of the autonomic testing is invasive (other then an IV placed for the tilt table) or difficult to tolerate.

[quietdynamics]

Wishing you success with Neurontin.

DH has Diabetic neuropathy; that was how I learned about Neurontin.

Neurotin has been shown to help with Fibro and it my case it has. Esp. hip pain that made it difficult to walk and navigate stairs. At the therapeutic dose of 2400mg.

Here is an example of how DH explained how Neurotin works (there are other explanations as well.)

"..gabapentin's effects involve binding to a specific subunit of voltage-gated calcium channels on neurons. This binding, she said, reduces calcium flow into the nerve cell, which reduces the release of some signaling molecules involved in pain processing."

[Dolly Dimples]

  Go for it Elaine, and please keep us posted,
                     Your quite a toughie!   Good Luck, Dolly x

[Carolina]

Dearest Angels,

It seems that the testing is really just for my POTS:  which is what happens when I stand up....I am faint and weak, and have to wait until my blood pressure is good enough to keep moving.

But I don't think the other things: bladder, bowel, sweating, etc. will be tested. 

That's OK, this is a start.  And Actually I am rather sure that nothing can be done about what is called either autonomic neuropathy or dysautonomia.

Basically that means that the nerves that control my blood pressure, heart, bladder, bowel, are affected just as the nerves of our system that produces tears and saliva have been affected.  Just as the nerves in my legs have been affected.

I really do not think there are any treatments to stop or reverse this process.  I am just thankful that none of this started until I was already 60........

My heart goes out to those of you who began so much earlier and are in full fledged destruction of your nerves......and yet you carry on.

We carry on, with love and support from this forum.

Hugs,  Elaine

[anita]

Actually, there ARE treatments.  I have been 'treated' for dysautonomia for 17 years now.  The BP is actually the one thing with a couple options for treatment.

If the condition is mild then increasing salt intake may be enough (salt retains fluid, and keeps BP up).  If more significant, then there is Midodrine, which is a vasoconstrictor medication that squeezes the vessels to keep BP up...because when you stand the blood pools in your feet.  Midodrine helps push the blood back up to your brain and relieving the lightheaded symptoms and increased heart rate (which increases as a compensatory reaction as the brain knows your BP is low so it tries to pump blood faster via higher heart rate).

The other medication for orthostatic BP is Florinef which is a mineral steroid and works by helping the body retain fluid to increase BP.  Aldosterone is the steroid that controls fluid retention and BP...Florinef is this steroid and increasing the amount in your body helps increase BP.

So actually you have a couple options.  I take both, but mine is severe and I have times where I cannot maintain an upright position.  There are also a few "hints" on how to increase BP quickly that I can share if you're interested.

The tilt table is an easy test and if you have problems on a regular basis, then it will likely show up during the test.

There are also meds to reduce heart rate if it stays to high, but I can fill you in on that later if that is also a problem you have (I'm not sure if this a problem for you).

Have they scheduled your test?

**I must add:  The new increase in my IVIG (slowly over 6 months up to 80 grams/month) is to slow or halt progression of both my autonomic & peripheral neuropathy, and to help reverse some of the PN specifically, like proprioception issues (which makes me fall) and of course my PN pain.  He does not believe my dysautonomia can be reversed (damage done is permanent), but he does think he 'might' be able to slow or halt the progression...which is important at my severe stage.

[Helene]

Finally! That's good news. I found that Duoxetine worked better than Neurontin for neuropathy for me. It's good you will be able to try it.

[Carolina]

Thanks again, Anita, QD, Helene and all who have comments and ideas for me.

Helen, I already take Duloxetine and it is my salvation.

But I started the Neurontin yesterday, and my sleep efficiency went from 93% to 98%. (I have a Fitbit bracelet)    I woke up without that total body myalgia that plagues me.

Anita, my POTS isn't anywhere as severe as yours.  thanks for telling me about what is available.  Between my knee pain, my PN, and the low level POTS, standing up and getting going is always a challenge, that's for sure!

I know and you know, Anita, that what I'm experiencing is exactly the sort of damage to my nerves that those with Sjogren's experience, but not from autoantibody attacks, but rather cytokines produced by my immune system.  The results are the same, the causes are different.

And that's one reason I was never eager to try immune suppressants.  Partly because my symptoms weren't 'that bad', but mostly because autoantibodies do NOT show up in my testing.  So whatever was happening, I could treat the symptoms (dryness, for example) but not the mechanisms causing the symptoms, since I didn't have autoantibodies to suppress!

I never thought that a lip biopsy would show Sjogren's.  I guess it might show problems, I know it would.  But not caused by autoantibodies.

I'm still baffled and amazed that some of us actually take but immune suppressants and add antibodies to our immune system with IVIG.  But of course at least 25% of those with CVID actually also do have autoantibodies....and some of us don't. 

We are so difficult for doctors to deal with, and that's the truth.  Which is why we MUST educate ourselves, so that we can understand what doctors are facing, evaluate whether or not the doctor understands us, change doctors if necessary, but primarily so we are presenting as sane, informed, and conscientious patients. Not as overwhelmed women with emotional issues and unrealistic demands. (which of course we ARE, often, who wouldn't be?, but we have to play the proper role in the doctors offices).

And so it goes.  I'm loving the Neurontin so far (I've taken anti convulsants that had the possibility of causing my skin to fall off, and so this is a walk in the park!  I've also taken 1600 mg of Depakote, couldn't get out of bed and my hair started falling out.  Again the Neurontin just helped me sleep better.)

Hugs,  Elaine

[anita]

I understand yours is not near the severity of mine, but both those medications are first line treatments...at small doses to start (not the amount I take).

Actually, doctors usually select one of those to start, and again at small doses and work up from there to tailor to each patient's particular needs.

I was just letting you know there IS treatment options, as you seemed to think there was nothing that can be done.  IVIG at higher doses is also an option for slow progression.