Alan has a new symptom!!!
 

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

bugs
 

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.

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

When it happens to me....
 

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.

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

Melody
 

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:)

So even though Alan has never had any thing happen above his ankle before (everything, for 18 years, has been between the toes, then from what I just read, this may mean that certain nerves are being stimulated in his foot and this is sending signals that happen to be read in the ankle and calf area??


Did I get this right?? Boy, you would think I would know more stuff than I know wouldn't you????

Thanks,

Melody

Tingling
 

I get tingling when I've overdone it - or from IVIG - my doc just did an NCS/EMG and says that he can see slight improvement in my arms..... my sensosry nerves are gone in my legs like Allans - but motor is also involved slightly and maybe thats whats zipping and zapping? All I know is - those nerves are reacting to stimulus.....

Mel, I had virtually the same feeling a couple days back, but mine was only over my feet.
I could have swore there were a couple of ants crawling over my feet, but when i look down at my feet, there are NO ants or anything else anywhere, this hasn't ever happened before, it only happened a few times over a couple of days and has now stopped [ i hope] altogether, i am hoping its just a sign of the nerves still trying to repair themselves, because i have noticed in the last couple of months, the numb parts are getting some more feeling back in them.

Mel,

In terms of the IVIG and B-12, I sure know what I would do . . . I probably sound like a broken record . . . but I have been advocating here for years about the need to do one intervention at a time if you want to know what works for you. And even then, there are no guarantees. That is, just because you take this vitamin or that supplement or that there treatment, it does not mean that whatever you took or did was responsible for the improvement.

But at least it might be. If you take two things at the same time, you will almost never be able to figure it out. Of course, for some, it may not matter, or maybe you don't care what caused the improvement. If so, then it is fine for Allan to start the B-12. It sounds to me that he is interested. And certainly the paresthesia he experienced is no reason to panic and reach for something else that could help him.

Clearly, Allan should be taking B-12, the only question is when. Take in all the feedback, discuss with him, and I am sure a good decision will be made, whatever choice is made. One that is consistent with his needs.

rafi