Has anyone been there/done that?

[56sushi]

My 23 year old son was diagnosed with Type 1 on 1/7/07. His initial AC01 was 17 and his initial blood sugar level was over 500. He had a week or so of feeling better and then seemed to get slammed hard by neuropathy. He has been pretty much housebound for the last 10 days or so. He states that his skin burns, his legs hurt and he feels shakey constantly. He is overwhelmingly fatiqued, says he has to lay down after taking a shower.
He has done a pretty good job of keeping his blood sugar in check after the first week or so but did not expect to feel so awful. His doctor prescribed an antidepressent to help and he said it made him naucous and did nothing for the shakes and fatique. He is having trouble sleeping and even walking around much.
He is a full time college student and works part time. He may have to drop all his classes this term if he can't get back to school soon.
He lives in the Upper Peninsula of Michigan which is pretty rural. His doctor is not an endo but has some D credentials and is highly regarded by people in the area as the "man to see" if you are D. His educator is also highly regarded. His doctor is not a real chatty guy but has said that his body has undergone a tremendous shock and will take time to recover.
My son seems to be giving up. His current theory is that he was just too damaged by walking around with diabetes for too long and will suffer from neuropathy for the rest of his life. I think he is beginning to believe it just isn't worth it.
I have pointed out this forum to him but he is having internet trouble and can't access it right now.
If anyone has a story to share of a very rough time with neuropathy soon after beginning insulin who has come out the other side it might give him some hope to hang in there.
He has no insurance so a lot of medical investigation is just not feasible.
Thanks so much for any help you can offer.

[Cyborg]

I know some nueropathy is reversible and there are also some drugs for nueropathy. Getting the bg under control and achieving a good a1c (under 7.0) should help tremendously. Good luck and welcome aboard.

[RLK]

Having those physical sensations soon after starting insulin is not uncommon. Many people, myself included, experienced this as well as vision changes right after diagnosis. My doc explained it this way: Your body has become accustomed to higher BGs gradually prior to diagnosis. After diagnosis and starting on insulin, your BGs drop rapidly and your body takes some time to become used to this new "normal". All you can do is keep on trucking, checking BGs and taking insulin and striving for near-normal numbers. Eventually, I think that these sensations will disappear if he's diligent about his care- they did for me.
Good luck!

[moorejames]

I had just the slightest symptoms of neuropathy prior to diagnosis. After bringing my BG down, I actually experienced more neuropathy than before.

It's slowly been getting better. (diagnosed in Oct 2006)

I've seen some speculation that it's possible for neuropathy to "feel" worse right after starting treatment. Theory is that the damaged nerves are repairing themselves and "coming back to life". I've never seen any studies that support that scientifically, but I suppose on some level it seems to make sense, and my own experience seems to support it as well.

My diagnosis levels were considerably lower and I'm T2, so you're son's milage may vary.

[HiImDan]

I have had my share of neuropathy and (as cyborg stated) it IS reversable, in the meanwhile it hurts like the devil's pinch. Please hang in there, it gets better. The depression will go away just as soon as he's under control. One more thing-between the ages of 9 and 12 I had it and didn't know it, the doctor (who's daughter has it) misdiagnosed me. I'm 37 now.

[LancetChick]

There is someone who posts over on the ADA message board who had pretty severe neuropathy at diagnosis..... to the point where she had no sensation in her feet, I think, and after getting her A1c's down to low 5's/upper 4's it was completely reversed. I don't recall how long it took, though. I've reversed retinopathy and frozen shoulder, and I don't see anything hopeless about your son's situation. As has already been stated, blood sugar control is key, and it sounds as if he's capable of managing that.

[Lizzy]

He lives in the Upper Peninsula of Michigan which is pretty rural.

Where in the UP is he? I was born and raised in Ironwood and back then (50's -70's) I always heard that Marquette had great medical care. Like the others have posted, after his body gets use to better sugar levels he should start to feel better. I take Neurotin for my Neropathy and it helps alot. Good Luck to your son. I hope that he will join the board, he can learn alot on here.

Liz from Michigan

[Chris Graham]

I agree with the PPs. His body is adjusting to the new levels. It can take several weeks and feel pretty lousy until you get used to a normal range. I also wanted to say, that I sometimes have to lay down after a shower. The heat lowers my BG fast some days. Make sure he isn't low or dropping before the shower and he might need to shorten the length or make the water cooler.

[JediSkipdogg]

I'm amazed that he could be walking around with an A1C of 17. An A1C is a value over 3 months of time, therefore he must have had a tremendously high blood sugar levels all the time. Was he feeling bad at all during the previous months before diagnosis?

Remember, if he got that high and it took 3 months it may take a few months to get him returned to normal. What medication is he on for treatment and how often is he testing his blood sugar? What other treatment methods are he using?

I think if he gets everything under control he can totally reverse itself. I'm just amazed that it got that severe without notice.

[56sushi]

Thanks so much to all of you for the perspective. I was on the phone with him last night relaying your replies and it seemed to give him some hope. He may be joining your forum shortly when he can get his internet problems ironed out.
He [B]had [B] [B]been feeling pretty poorly for a while but put it off to the stress of his schedule. He is almost 6' 4" and was down to 150 lbs., and was having lots of rashes and skin problems. He had been to the doctor last spring but no blood tests had been done. And, although he is kind of a recreational whiner, when he is really feeling poorly, he is extremely stoic, so he just kept pushing on.
I am only guessing at the spelling of his meds. He is on Lesp-something for his 24 hr. insulin and the humalog pen for his short acting insulin. The doctor gave him paxel and zanex (the zanex only for night use) to try and help him with the neuropathy and help him rest. It helped with the night sweats but he was still having trouble with pain and burning in his legs and tremendous restlessness and "jumpiness" as well as the fatique. He hasn't been taking the antianxiety meds very long but he is really frustrated by not being able to get to classes. Yesterday the doc gave him something for restless leg syndrome and although he was still feeling some pain he felt it was manageable for the first time in the last few weeks. He was going to go to classes today.
Again, my great thanks to everyone who replied. I have been really concerned about him.

[56sushi]

He lives in Marquette, though we all lived in Ontonagon for a long time.

[orsaugen]

This from a guy who was diagnosed at age 6, is now 69 and hence has lived with Type 1 D for 63 years. Your son has been through a terrible shock, but now that he is diagnosed and can get under control he should not despair. I have lived a very full and rich life (the only things I haven't been able to do is to fly an airplane and serve in the armed forces). I have travelled the world, done all the jobs I wanted to do, and am currently enjoying retirement.
I am not an MD but I would bet that your son will begin to recover from his physical shocks fairly soon after he gets under control. I, too, live in a rural area, but have been able to find an excellent Diabetes team at a hospital about an hour away from my home. My endo and my diabetes nurse help me monitor my condition -- my average glucosae levels are now around 90-93 and my last A1C was 4.9. Control is the key, and your son will put his despair behind him as soon as he realizes he can control the diabetes rather than having the diabetes control him.
The best of luck!