Orphan Diabetics

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Comment by JDavid on September 4, 2009 at 8:56pm

Hi Fellow Orphans........

AS most of you know I started this group. I never quite fit any of the usual diabetes TYPE pigeon holes. My decades of dealing with teh D-Dragon has been wild and not quite typical. Recently I went to a new eye doc who told me my diplopia was NOT due to diabetes (maybe MS) and proceeded to tell me why. For decades everything got blamed on the D-dragon.

The new eye doc wanted nothing to do with checking/updating my glasses prisms, to correct my double vision. Now I may need to find a neuro-optlamologist specialist instead. Found I NEED a referral to see one adn made an appointment with a nurologist in my effort to get a referral.

Well the neuro requested records, some of which I already had copies. I already knew MS had been considered by other docs before, but never followed up on. I did some research and found that my MRI was almsot a text-book description of MS imaging features.

This week I now am to see my PCP about the possable MS issue a few days before I see the new neurologist about it. At the moment I am still in limbo with the MS issue, maybe I will get some answers soon. Since both type-1 diabetes and MS are autoimmune, there is a documented mutual risk of having both. IF that turns out to be the case, then it would explain many issues that have made my diabetes a bit unique.

The bottom line is I may get re-labeled as a type-1 (still a little a-typical) diabetic with MS.

FUNNY.. I started this group and now I may ???? soon become a non-orphan diabetic.......the wierdness never ceases..........lol for me anyhow.
IF and its still a big 'if', the MS is confirmed...will ya guys still welcome me here?

GOMER

Comment by Susan K on August 6, 2009 at 7:46am

Katie - I had a very hard time for several months after my TP surgery with unexplained lows, particularly before I got my enzyme balance right. I can't conclusively say that the enzyme balance was to blame for the lows but it did seem that I had fewer lows, especially in the morning, after switching to Creon and increasing the amount I took with meals.

If you're not already a member, there is a yahoo group for TP diabetics that you may find very helpful:
http://health.groups.yahoo.com/group/pancreatectomy-diabetics/

Comment by Katie Zeller on August 5, 2009 at 11:45pm

V is having a bit of a difficult time with unexplained lows (and some highs). He doesn't have a pancreas (since May 20, 2009) so must take enzymes to digest food.

Does anyone else do this? Could the timing of the enzymes effect the way the insulin/carb ratio works?

For the record, we asked the docs who just waved it off in typical French fashion (the surgeon) or shrugged (the endo). Both sets of docs would just rather have him in hospital so they can control him rather than out on his own... living....

Comment by Janet Ballone on July 27, 2009 at 6:17am

I would much rather be a "traditional" diabetic because at least they have hope of a cure some day. I would need a pancreatic transplant if there is such a thing, for a cure. I've only been a diabetic a short time and I do feel so bad for people who have had this condition for many years, especially the children who don't know what it's like to be "normal". I lived many years quite healthy.

Comment by Janet Ballone on July 27, 2009 at 6:10am

I developed Pancreatits 3 years ago, cause unknown. Hospitalized 2+ months most of which was in ICU. They placed a fentynol patch on me which got me addicted to the drug which resulted in another hospital stay to detox. I'm off all pain meds now, just take my insulin soon to be introduced to a pump.

My attitude is I live one day at a time and try to do my best. I'm just happy to be alive after that whole ordeal and I'm thrilled to have found this wonderful site.

Comment by JDavid on July 10, 2009 at 6:48pm

One REASON its a bit quiet here is, we a the few, the proud, the orphans.......lol

I have been researching diabetes AND my own personal history....and learned a lot about both. You know hindsight...being 20/20 (r we on TV?).

Unlike most T2s, a carb is a carb is a carb, I am not very sensitive to selected foods. I am, like any diabetic sensitive to how fast a carb hits, like OJ as opposed to solid foods etc.

Funny thing, one of my diabetes complications goes back to when I was in high school, nearly 20 years before my FORMAL Dx! I have a rare form of strabismus with aspects unique to diabetic neuropathy.

There were OTHER sign I was diabetic going back to when I was 14, just never put 2 and 2 together and got D? (4th letter of the alphabet)

(*&*( GOMER (mil-speak for GET OUT!, My Exam Room)

Comment by Katie Zeller on July 10, 2009 at 10:28am

Wow, I just clicked and I'm in....
I'm the geek.... My hubs is the T1 - he had his pancreas removed on May 20, 2009.
I think that makes him an 'other'.

Comment by Lucile K. on May 7, 2009 at 6:54pm

Welcome Amylia Grace. I'm up for adoption. This discussion forum is soooo quiet. Lucy

Comment by JDavid on April 26, 2009 at 2:48pm

WELCOME Amylia!

Myself, I am listed as a T-2, Sometimes I have about zero natural insulin and other times I have a little, jsut not near enough. I also keytone at levels more typical of T-1. I think (personal opinion here) the establishment has a harder time understanding some (not all) of us OTHER/ORPHAN types. Sometimes I wish I was just one of the simple well defined types, then other times it interesting.

If the docs do not understand us, how are we expected to understand it?

(*&*( GOMER

Comment by Amylia Grace on April 26, 2009 at 9:56am

I'm not an 'other' or orphan diabetic, but I'm interested in your stories, so I joined this group, although I'm t1. Accept me anyway? :)

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