Hi to both of you!!!
He has had a recent MRI of the back. He's had MANY mr's of the back. We went to the 4t back doctor about 2 months or so ago. He completely ruled out the fact that his neuropathy might be related to his back.
He said "I can tell you definitively!!! It's NOT his back"
And the neurologist yeaterday said "There is NO compression", his feet are (for want of a better word), disintegrating. He sat there and demonstrated that way way down the road (because this is a slow progressing neuropathy, the bones in his feet will simply go 'SPLAT. Because now he has no arch. The nerves in his feet are slowly dying. He said that when they die completely there will be no pain, and he didn't elaborate further. I can tell he was holding back for fear that Alan might get so depressed. (I saw this in his eyes).
The thing that struck me was that one of the last things he made Alan do was go into the corridor and walk back and forth and do stuff with his hands. I saw the look of amazement on the doc's face and he said "He walks pretty good". I could tell he was thinking "this guy can walk???" that well??"
Alan used to drink in his 20's. He used to black out. I never knew this because I met him at 32 and he had also given up smoking. So he smoke and he drank from his teens to whenever he stopped doing this.
I have no idea if this behavior contributed to his neuropathy and we'll never know. At present there is no test to definitely say "yup, THIS IS WHY HE HAS THIS".
Not gonna happen.
I also have no idea if they ever did a paraspinal musculature thing.
I know that last night he said to me "Melody, I can only imagine what it must be like to be electrocuted and I hope I never have that experience".
Also, we explained to the doctor that when Alan is upright, or walking, HE HAS NO TINGLING BETWEEN THE TOES. Only when he lies down, or sits down.
Now when you've told this to 11 doctors (give or take), and the final guy (who is the head neurologist at this hospital, and who MUST know his stuff, right?), because he is also a muscle specialist, well, you simply have to throw up your hands and say "well, the medical field is NOT going to be of service to us, we have to TAKE CARE OF THIS OURSELVES".
I shall continue to take care of him and myself. I am now using a product called Healthifeet and will follow instructions and massage it for 5 minutes twice a day. It's supposed to maintain good fot health.
Alan said to me last night "I guess I have to start looking at the scooter store"??? I said 'not on your life, you know what you have to do"
He said "yeah, I have to start exercising and move my body".
Years ago, when he was actively going to Dr. Theirl, and he went to the gym and did whatever weights he did at the gym, well, even though he still had the complete numb feet, he felt 100 times better. But then he got the foot ulcer.
So now it's all debrided and I rub vitamin E on the outside of it to keep the calluses from forming so hard.
I was told to do this by an physical therapist years ago, when he had had the operation on the muscle in his calf, so it would alleviate pressure on the foot ulcer. That operation failed, but he had to go to physical therapy. I would often go with him and it became a social event, and I watched the therapist do his thing on Alan's calf. He then said 'Melody come over here".
He showed me how to put Vitamin E over calluses and it would help break them down.
I am doing this faithfully.
We haven't gotten to the end of the road YET.
But what I really want to know is the following:
Can a person abruptly stop IVIG after being on it for 2 years. He is now getting it once every 8 weeks.
After this weekend, can he just stop? The neuro guy he saw yesterday is forwarding his results to his IVIG prescribing neurologist.
Can Alan call her up in a few weeks and say "this guy said I don't have CIDP, and I shouldn't be getting IVIG because it is NOT WITHOUT RISK (his words exactly)."
Can Alan then ask her if he can stop IVIG all together. Or (if any of you know), does he have to be weaned off.
We don't want him to go into any kind of shock or withdrawal. I have no clue about this and I get so many different anwers from various people.
Anyway, thanks for all your help and good info.
Melody
Quote:
Originally Posted by glenntaj
--in the process of doing the needle EMG/nerve conduction studies,did they do Alan's paraspinal musculature in the lower back?
This might point to disruption of signlas between the nerve roots and the nerves they serve that eventually go down the legs. (I just had one done for my weird leg/sacral/pudendal thing going on--all normal--and though it's not the most pleasant thing in the wrold, the discomfot is generally fleeting.)
As I've written before, I've always thought that Alan might have mutliple things going on--I still think that an autoimmune etiology for some of this is likely, given his other medical history, and that there may be "double crush" exacerbating the symptoms if there's any compression at all in his lower back or in his legs (speaking of which, does he have a recent lumbar MRI?).
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