My son is not crazy!

[56sushi]

I am both angry and feeling vindicated. My son's dr. kept insisting that young Type 1's don't get neuropathy. He went so far as to refer my son to a therapist based on his theory that anxiety was causing his symptoms (or an exaggeration of them). There is no way in **** that my 23 yr. old macho son would be crawling across the floor, crying, to get to the bathroom, because his feet are so swollen and painful that he can't stand up.
His gf's mother was talking to someone who said they heard of diabetic nuritisis. I googled it and found a syndrome called diabetic neuropathic cachexia that matches my son's symptoms to a T. Just faxed the article to the dr. Plan to do more research soon.
I guess this is something many of you have had to experience in your travels through this disease.
NOW-lets treat it!!!

[ProudNanaof5]

I hope your DR is not the kind that resents being "showed" information that he didn't come up with. Most DRs don't like the "patients" coming up with what it "might" be. You probably have hit on something. But having the DR carrying out YOUR DX for your son is almost a NO. Is your DR a endo or just a medical DR? Sounds as if maybe you need a second opinion. I don't know why someone as young as your son is couldn't have neuropathy. Everyone is different and especially if he has had some control probs with bs...Good Luck.

[KritterMom]

I hope your son gets better soon. That must hurt soooo badly.

[BriOnH]

How swollen are his feet? When you press on them does it leave a thumb mark that takes a while to return? Has he had any problems urinating?

[ant hill]

Aww that is so depressing, I feel for your son and i know becuse i have suffed a stroke and i cannot walk for a month little own swollow!!. If you get no satisfaction from you doctor then go for another one. keep looking until you strike a savior.
All the best from downunder. :mad:

[HollyB]

I googled it. It sounds like a terrible thing to endure. I hope your son is able to get a proper dx and treatment that brings relief.
Anxiety my arse.

[Funnygrl]

Why the heck did the doctor feel type 1s don't get neuropathy in the first place?

[lilituc]

Why the heck did the doctor feel type 1s don't get neuropathy in the first place?

My guess would be the common view that young people (especially children) don't get complications. Like there's a magical forcefield over them. Except, recent studies are showing it's not true.

[June91]

56 sushi, your son's symptoms do not match any common anxiety symptoms. Of course neither of you are crazy! Doctors' egos sometimes tend to get in the way of treatment. I hope it's not neuropathic cachexia, because it's rare and extremely painful. Swelling of feed could indicate a number of other things, including specific kidney and liver functions. Good luck and keep us posted.

[v3xtr0n]

My son's dr. kept insisting that young Type 1's don't get neuropathy.

I think your Dr needs re-educating with regards to Diabetes. Why does he think that we have to have our feet checked on an anual basis - just for a laught?

I hope your son gets better soon and that they do something about it for him. :)

[56sushi]

Thanks so much for your support, but just as Nana predicted the dr. wasn't much interested in the medical paper I faxed to him.
My son is a new diagnosed Type 1 - 23 yrs. old. His doctor has been treating diabetes for 30 yrs. and has a Type 1 son. He repeatedly stated that in his experience he had not encounted neuropathy in young patients; that it took years of poor bg management to create.
His doctor is a GP but has several certifications for diabetes treatment. He has consistently been the person in the Upper Peninsula that we have been directed to for diabetes dx and treatment.
My son ended up in the ER 2 nights ago after his feet swelled up terribly in the night. He was also found to be dehydrated and his blood pressure was through the roof. His bg # are usually spot on though in the last 24 hrs. he has had a couple of unexplained lows (50s-80s).
We would like to keep working with this dr. but I need him to acknowledge the possiblity of this diagnosis instead of ignoring my son's pain (how I wish he could see my son at 2 am!) and exploring a bunch of possibilities that imo are less likely and will cost my son a ton of money (no insurance)
Can anyone give me some suggestions how to search for a doctor familiar with this rare condition?
I am planning to bring him to Detroit, where I live because he really is having trouble taking care of himself because he can't walk.

[BriOnH]

Has he had kideny tests done? Each time you post it leads me to believe his kidneys are infected.

If you could get the standards:
Blood:
Creatinine
BUN
K+
Na+
Urine:
Protien
protein / creatinine clearance

I hope they all come back great. I am worried for your son :( - please keep us posted

[Cyborg]

Personally, I would drop that doctor in a heartbeat. Help your son find a good endocrinologist to manage his diabetes. They are the true specialists for diabetes care.

[greengirl]

Thanks so much for your support, but just as Nana predicted the dr. wasn't much interested in the medical paper I faxed to him.
My son is a new diagnosed Type 1 - 23 yrs. old. His doctor has been treating diabetes for 30 yrs. and has a Type 1 son. He repeatedly stated that in his experience he had not encounted neuropathy in young patients; that it took years of poor bg management to create.
His doctor is a GP but has several certifications for diabetes treatment. He has consistently been the person in the Upper Peninsula that we have been directed to for diabetes dx and treatment.
My son ended up in the ER 2 nights ago after his feet swelled up terribly in the night. He was also found to be dehydrated and his blood pressure was through the roof. His bg # are usually spot on though in the last 24 hrs. he has had a couple of unexplained lows (50s-80s).
We would like to keep working with this dr. but I need him to acknowledge the possiblity of this diagnosis instead of ignoring my son's pain (how I wish he could see my son at 2 am!) and exploring a bunch of possibilities that imo are less likely and will cost my son a ton of money (no insurance)
Can anyone give me some suggestions how to search for a doctor familiar with this rare condition?
I am planning to bring him to Detroit, where I live because he really is having trouble taking care of himself because he can't walk.


I really feel for you and your son. Don't sick with a doctor who is going to ignore the complaining symptoms. I was born with a genetic defect which makes my collagen faulty. I have have been misdiagnosed with Juvinle Arthritis at age 8 and lived in constant midiagnosis until two years ago. At the time all my docs knew each other and felt because I suffer from depression and anxiety my symptoms were not real and one even refused to treat me since he determined my illness was psychiatric, even though the psychiatrist he sent me to told him at one point he though I was depressed and anxious because I was in pain and have no DX and no treatment.

Based on my family history and my symptoms I did a google search and found something Vascular Ehlers Danlos Syndrome. Not only was I not crazy which I had truly come to believe because my doctor was so dismissive, but when I contact a rhuematology given to me by their foundation it was one of the first things out of his mouth. I was sent to a geneticist and was found to have two rare genetic syndromes one of them EDS.

Trust your insticint, and advocate for you son. I know he is 23 but I'm 26 and at 23 if my mother hadnt advocating for me, I'm not sure I would have with everything that was going on.Switch doctors if you must and know your son has the RIGHT to a proper diagnosis.

[mcneely]

Personally, I would drop that doctor in a heartbeat. Help your son find a good endocrinologist to manage his diabetes. They are the true specialists for diabetes care.

I agree with Cyborg, ask for a referral through the clinic he is with, not the doctor himself. Good Endo's read up daily on new studies etc and are much more aware than a general practition.

How has his A1C been the last few rounds? Overall, if they have been good, my suspicion is it is not related to his diabetes, but again, I am not a doc. He might try elevating his feet above his chest througout the day, this might help with the swelling, and, tell him to remove the socks or anything else that constricts his skin - at least until the swelling goes down.

Make sure he is drinking plenty of fluids and, his lows might be related to him not eating as he normally would, due to being uncomfortable. Just have him drink juices to compensate for the food he might not be taking in.

Good luck.

[56sushi]

Has he had kideny tests done? Each time you post it leads me to believe his kidneys are infected.

If you could get the standards:
Blood:
Creatinine
BUN
K+
Na+
Urine:
Protien
protein / creatinine clearance

I hope they all come back great. I am worried for your son :( - please keep us posted

This worries me too, BriOnH. He is supposed to spend today doing on ongoing urine test-basicly urinating into a jug today and tomorrow.
I will keep your advice in mind.

[JasonJayhawk]

56sushi,

You said your son was recently diagnosed as Type 1. How recent?

If he was "recent" as in the last 3 months or so, he is going to experience very strange things with his body. What was his initial A1c?

Once a person reduces their high glucose levels to more "normal" levels, the body is very angry, to say the least. You will likely experience a temporary neuropathy. This will go away once glucose levels have been stabilized for a few weeks. This neuropathy is due to the osmotic pressure change of the high glucose in the nerve cells. Glucose does not transport across nerve cell membranes very quickly (it must go through a pathway that is beyond discussion here) -- but the nerve cell can be placed under a temporary stress that will cause problems.

Like Bryan said -- his kidneys should be checked.

In addition, his electrolyte levels should be checked, which is part of a standard Chem12 test. Make sure he has the correct potassium and chloride levels. Newly diagnosed Type 1's can have an imbalance of electrolyte levels.

Bloating is very common when starting insulin treatment. Again, this is due to the osmotic change. The body is actually preparing for a new glucose high (for protection), so it is storing water in order to prepare for helping to flush out the excessive (over 180mg/dl) glucose in the kidneys. It will take several weeks for this to go down. In fact, the bloating will likely make his pants size larger if he went undiagnosed ... he will feel like a woman having bloating from her period! It is PAINFUL!

Thyroid levels (TSH) could be checked next, as thyroid problems can be linked to Type 1 autoimmune(?) problems. Thyroid problems can cause the "pins and needles" sensation. But if your son was recently dx'ed, then it's likely that he's experiencing withdrawal from high glucose levels.

I'm not so sure about diabetic neuropathic cachexia. It is very, very, VERY uncommon in the first place, and with your son being recently diagnosed, I don't think he could have it. You didn't say much about your son losing a lot of weight, but all Type 1's lose weight in the beginning, because of lack of insulin to build and maintain fat levels. Your son would likely have extreme pain in his arms and legs, too, with this condition. Neuropathic cachexia is related to extreme poor control of diabetes.

In your son's case, if he was recently diagnosed, he hasn't even had a chance to establish good glucose control.

Give it a few weeks. It took me about 2-3 months before realizing how sick I was after my diagnosis (in my 20's, too). Tight control will help get through this hump faster. He might even experience vision changes (if not yet), which is all normal, and very temporary (a couple weeks).

Please keep us posted!

[Gary_W]

I'm a long way from being a doctor, and I know it is frustrating when the guy who is treating your son is dismissing your help as far as diagnosis goes. But he is probably just looking for the simpler things at the moment as there are so many simple things that can cause such symptoms that are far more likely to be the cause than a rare condition. I'm not saying it is impossible for your son to have this condition, just saying that you need to investigate a lot of other avenues before focusing in on something that is so incredibly unlikely. Only when the likely causes are excluded can you then home in on the unusual and unlikely stuff.

I think that, having diabetes, we often forget that we are AT LEAST as likely to get any other random condition on the planet that is completely unrelated to our long term condition. And then there are other bits and pieces that become more likely for us. We are so used to diabetes causing us problems that it is always the first thing we blame when we get symptoms. How many of us get a headache and assume it is related to our blood glucose? If all headaches were caused by BG problems, Advil et al wouldn't be doing so well as they are.

BriOnH's suggestions re getting the kidneys checked out is a good idea.

On another train of thought, it could be something as simple as gout; sudden, red swelling and incredibly painful. Joints in the feet are the most usual bits to get it, and gout can also go hand in hand with elevated blood pressure. Dehydration can actually bring it on if you're going to have an attack. Obviously difficult to say, but from your description this could possibly fit your son's symptoms. Gout is very common in kidney patients, also more common in people with diabetes than it is in Joe Public. Gout - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Gout#Attacks) will tell you a little bit more. I have a sister in-law who had a kidney transplant 20 years ago, and she is unfortunate enough to suffer from gout on a regular basis, hence my thoughts in this direction.

Whatever the cause turns out to be, I wish you and your son the very best.

Gary

[mcneely]

Hi 56sushi,

I just so happened to see my Endo at the park today while I was spending some family time. I thought of you and gave her your scenario and she said it doesn't sound diabetes related, not directly related at least. She said to have his kidneys and thyroid checked, as many people on this thread already mentioned.

For what it is worth.

Good luck and keep us informed.

[56sushi]

My son was having such a bad time yesterday he called his doctor again and his doctor referred him to a neurologist today. I drove up here last night and went with him this am. The neurologist read the article I brought and did an evaluation based on the recommendations within it as well as some tests he typically does. He said he had never seen a young person like my son with these types of neuropathy symptoms but his condition was consistent with small nerve neuropathy and the condition referred to in the article known as insulin neuritis. Ended up prescribing Lyrica which was the treatment we had asked his gp about 2 months ago and he said was unnecessary because my son iho did not have neuropathy.
His thyroid was already checked out and is fine. We will get the latest kidney test results on Mon.
I may have needlessly alarmed some of you with the reference to cachexia. The article refered to patients losing weight like cachexia patients but with insulin neuritis the condition resolves itself as the patient's bg levels stabilize.
I'm feeling that we are headed in the right direction but will keep you posted. Send us good thoughts on the results of the kidney screen.

[JasonJayhawk]

Thanks for the update.

Here's one article you may have run in to:

Entrez PubMed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12822825&dopt=Abstract)

This is one kind of neuropathy that can end on a positive note. Like what was said earlier, his body is "not happy" about the significant glucose change.

The swelling does not sound like good times. Hope the Lyrica works... I've read that some people dislike the side effects of it enough to discontinue it, but hopefully he doesn't have them quite as bad.

Keep us updated!

[andypoo]

My son was having such a bad time yesterday he called his doctor again and his doctor referred him to a neurologist today. I drove up here last night and went with him this am. The neurologist read the article I brought and did an evaluation based on the recommendations within it as well as some tests he typically does. He said he had never seen a young person like my son with these types of neuropathy symptoms but his condition was consistent with small nerve neuropathy and the condition referred to in the article known as insulin neuritis. Ended up prescribing Lyrica which was the treatment we had asked his gp about 2 months ago and he said was unnecessary because my son iho did not have neuropathy.
His thyroid was already checked out and is fine. We will get the latest kidney test results on Mon.
I may have needlessly alarmed some of you with the reference to cachexia. The article refered to patients losing weight like cachexia patients but with insulin neuritis the condition resolves itself as the patient's bg levels stabilize.
I'm feeling that we are headed in the right direction but will keep you posted. Send us good thoughts on the results of the kidney screen.

I pray that he finds out and he gets the right help,I hate to think of my son in pain like that,it's almost unbearable to watch,especially when you can't make it go away. Like you said,it does sound like your on the right track now. hope it's a successful outcome.

[BriOnH]

Hope he gets better soon 56Sushi. I hope you find a better doctor. You are a great parent and am confident you will get to the bottom of this and be able to help your son through it. From the posts I have read from you, in this thread and a couple others it does sound like a kideney infection and/or neuropathy. Neuropathy would be rare in his situation, but it is far from impossible. I am hoping it isn't neuropathy and is something that can be fixed fast. God bless you and your son.