[MelodyL]

Well, this is a first. Alan has always ONLY HAD THE NEUROPATHY IN SOME TOES OF EACH FOOT. And 4 years ago, the foot burned and he had to go on fentanyl patch. But all that changed when he found Dr. Theirl and his pain level was lessened.

He told me the following a few moments ago. "Melody, yesterday, during the support group meeting, on my left leg, from the ankle to mid calf (for about 10 seconds), it felt like bugs were crawling on me. Kind of like a tingling. Then it stopped. Never happened before, and today, it happened for 3 seconds. what does that mean?"

I did not know what to say to him.

Now this bug crawling feeling is all new. The weather is horrendous outside, very cold and damp and horrible. And because he is healing from the ulcer on the foot, (by the way, this is not the same leg that has the ulcer). He has not been able to go to the gym for almost 3 weeks. He really misses it. He got the all clear from Dr. Baird on thursday. So after his IVIG on Monday and Tuesday of next week, he'll probably go back to the gym on Thursday. He knows he can't go on any treadmills or anything that might aggravate his ulcer.

So I responded, "well, maybe it means you are healing, (I have no clue, and I REALLY HOPE HE'S NOT GETTING WORSE). Since I do not know what it feels like to have bugs crawling on you, I really don't know what to tell him.

Oh, he was tested for restless leg syndrome by Dr. Fred and he said Alan does not have this. And he has never had this happen before.

He has had neuropathy for 18 years. Could it be that because he hasn't worked out for a while, his nerves are jumping or something. I really have no clue here.

Any ideas????

Melody

[cyclelops]

Hi Mel

It is a parasthesia. It is one of those unusual feelings people with sensory neruopathy get at times. I would not be too concerned at this point. You get so many odd sensations with neuropathy, that you almost get to the point, that you just say, "hmm...OK, here is another one." Hopefully it just comes and goes. Mostly goes....The ulcers are another story and really need to be watched.

[MelodyL]

That's parasthesia??? I had heard of this but because he's had this for 18 years and never had the bug crawling thing!!!!!! Oh well, it's just another reason to start taking B-12 methyl if you ask me.

He doesn't want to start that because he is on IVIG and as he puts it. If I improve, how do we know it's the IVIG or the Methyl B-12.

Do any of you think he should be taking the methyl b-12?

And about his foot ulcer. He's had it for over a year. It's recurring because of a deformity in the bone under his foot. Hopefully he'll be getting new orthotics. But it's just about healed now. He always heals, then it opens up because he must aggravate it because HE IS COMPLETELY NUMB.

Oh, and if anyone knows what this is please tell me. There was a guy at the meeting last night who talked about foot ulcers. He had one on the side of his foot.

He was treated at a wound treatment center and they used a SILVER FIBER PATCH thing on his ulcer. He kept telling us "you must get the silver patch thing". He didn't know what it was called but it seems it is infused with some kind of medicine that promotes healing.

Anybody know what this guy is talking about??? Thanks Melody

[dahlek]

it's telling me two things...
1] it's time for another infusion [that's next week, right?]
2] that if it's not bothered him in this way before, and this is IMPORTANT, that the infusions are working.

It should diminish noticably during or after the infusions. For me, it does! If it gets worse for the week after the infusion, call the neuro and report it. Either way, the neuro needs to know and mite think the same way as I do. You never know with docs. - j

B-12 and IVIG are totally beautifully compatible! No worries there to be sure.

As for 'silver patches', Web it up, I encountered it reading up on diabetics w/ulcers the other day. Even some CrocsRX have something silver in them for anti-inflammatory, bacterial reasons.

[MelodyL]

Dahlek:

You said: "it's telling me two things...
1] it's time for another infusion [that's next week, right?]
2] that if it's not bothered him in this way before, and this is IMPORTANT, that the infusions are working.

This parasthesia thing TELLS YOU THAT THE INFUSIONS ARE WORKING???

Really???? Please explain further.

Thanks much.

Melody

[BEGLET]

My right foot and hand went completely numb overnight when my PN first started - when I have IVIG my right foot tingles all night! So its stimulating the nerves - a good thing I think! It can also be very annoying - but at least theres something going on there