new event, soo scared. Autonomic sfn?

canagirl · 08-12-2015, 02:45 PM

Quote:

Originally Posted by en bloc

You need MORE Gabapentin then 1800. Most with severe neuropathy take up to 3000 mg a day or MORE. 1200, is nothing really compared to the pain you describe and 1800 you plan to increase to isn't much more. You may notice a small change, but you need a much bigger increase (slowly of course, but steady increases).

I honestly don't think your SFN is from the acupuncture, because you went to get the acupuncture due to nerve pain you were ALREADY having. Yes, I think it made it worse but it is NOT the cause of this and you should still try to explore possible causes while you treat your pain. You have been at 1200 mg for a while with no increase. Your GP is not a pain specialist or neurologist. You need to see a pain mgmt doctor or get your neurologist to properly treat your pain with larger doses of Gabapentin. Other drugs can be used with Gabapentin as well...but you need someone experienced in prescribing your meds.

Hi en bloc,

My neuro did refer me to the pain management clinic but she said it's about a 2 year wait....
She said to start with ramp up to 1800 gabapentin and at that point she will add 30 my Cymbalta. She said if that doesn't work we can keep upping the gaba until 3200.

canagirl · 08-12-2015, 03:34 PM

. I talked to my gp about giving me steroids and he said he doesn't feel comfortable doing IT because I would need very high doses and steroids can cause serious problems. He said it would have to be a specialist. I asked the neuro about a nerve block to help with the head and scalp pain and pressure and she said that doesn't help and it's only used for people that have arthritis...I told my gp this and said not true, he said he does hundreds of them in his office. He told me to do some stretches on that area ( a lot for 10 days) if that doesn't help he will try injecting one side of my head to see what happens. I'm not sure what type of injection ( forgot to ask the name). He said he doesn't inject into the nerve but beside it. The goal is loosen muscle around the nerve to relive the pain. A trigger point shot?.. Anybody know what this is and if it may be helpful?

en bloc · 08-12-2015, 03:50 PM

A specialist is a good idea for steroid, as yes, they can cause serious and permanent health problems with long term use.

But it would be a good thing to try...just to see if your neuropathy is inflammatory based. They could do 40-60 mg of Prednisone a day for 5-7 days and by then you would know if it would help at all. If it does, then you should see someone about long term treatment and whether you would benefit. Sometimes even smaller doses are enough to help the inflammation and pain. It's the one proof positive test to tell if it is inflammatory based neuropathy.

LouLou1978 · 08-12-2015, 04:07 PM

Quote:

Originally Posted by en bloc

A specialist is a good idea for steroid, as yes, they can cause serious and permanent health problems with long term use.

But it would be a good thing to try...just to see if your neuropathy is inflammatory based. They could do 40-60 mg of Prednisone a day for 5-7 days and by then you would know if it would help at all. If it does, then you should see someone about long term treatment and whether you would benefit. Sometimes even smaller doses are enough to help the inflammation and pain. It's the one proof positive test to tell if it is inflammatory based neuropathy.

I agree with en-bloc, it is worth a try, this is the treatment which I will be having, it is only short term so there shouldn't be any serious side effects

northerngal · 08-12-2015, 08:08 PM

Sounds like your GP is a little more helpful than the others. Can you ask him/her to prescribe prednisone for you. It is a commonly prescribed drug for many different things from poison ivy to lingering coughs etc. I'm surprised they are giving you such a hard time with this, it's a very inexpensive drug.

2 years to get into a pain management clinic?? That is ridiculous. Do you have other options, so you could possibly get a different neurologist?

madisongrrl · 08-12-2015, 08:17 PM

Quote:

Originally Posted by northerngal

2 years to get into a pain management clinic?? That is ridiculous. Do you have other options, so you could possibly get a different neurologist?

That is a long time to get into the clinic....but it is at minimum 6 months to get into the pain clinic at the teaching hospital in Madison, WI.

en bloc · 08-12-2015, 08:20 PM

Northerngal is absolutely right...your GP can Rx the Prednisone. When I mentioned specialist, I was meaning if you were to take long term...so specialist would know what to look for in regards to monitoring damage and other side-effects.

But for initial trial to see if your neuropathy is inflammatory by all means, your GP can do the 5-7 day course. It is super inexpensive and very low risk of problems (with just a short term course). You would at least know one way or the other whether your neuropathy is inflammation based. If it is, then you can see specialist to discuss and assess whether long term (and what dose) is appropriate.

What did your neuro say today? I don't understand why he hasn't considered short course of steroids to check for inflammatory based neuropathy.

canagirl · 08-12-2015, 09:49 PM

Quote:

Originally Posted by en bloc

Northerngal is absolutely right...your GP can Rx the Prednisone. When I mentioned specialist, I was meaning if you were to take long term...so specialist would know what to look for in regards to monitoring damage and other side-effects.

But for initial trial to see if your neuropathy is inflammatory by all means, your GP can do the 5-7 day course. It is super inexpensive and very low risk of problems (with just a short term course). You would at least know one way or the other whether your neuropathy is inflammation based. If it is, then you can see specialist to discuss and assess whether long term (and what dose) is appropriate.

What did your neuro say today? I don't understand why he hasn't considered short course of steroids to check for inflammatory based neuropathy.

I asked my gp for the steroids today ( even a short course) and he said no, he doesn't feel comfortable with it. The neuro just flat out said no because it doesn't help sfn, same with ivig. I'm going to try to find some literature that says it does and present it to her

canagirl · 08-12-2015, 09:50 PM

Quote:

Originally Posted by northerngal

Sounds like your GP is a little more helpful than the others. Can you ask him/her to prescribe prednisone for you. It is a commonly prescribed drug for many different things from poison ivy to lingering coughs etc. I'm surprised they are giving you such a hard time with this, it's a very inexpensive drug.

2 years to get into a pain management clinic?? That is ridiculous. Do you have other options, so you could possibly get a different neurologist?

The neuro said its about1.5-2 year wait list. She said she would refer me to the private clinic as well because it's a shorter wait but it's sooo expensive, I don't know if I can afford it. For example 1 lidocaine infusion is 2000

KnowNothingJon · 08-12-2015, 10:15 PM

Sorry about the no go on the steroids.

I hope that the gabapentin increase and cymbalta offer some respite in the meantime.

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