Your story sounds so much like that of my own, I'm so interested to find out your result, I have been going through all this since I was pregnant 18months ago and still not had an actual diagnosis, I have my next consultant appt next week and at the last one he said he wants to test for mody, I just feel all in a blur/denial with it all but it's nice to know I'm not the only one and I hope you may be able to take that out of this message also. XHi
I was diagnosed with diabetes in feb 2015, however, it's not bee very straight forward. We do not know which type and even my consultant is confused with what's going on. Currently they are leaning towards either type 1 with negative antibodies or a kind of MODY. Currently on twice daily insulin. 28 years old, slim build.
Since I was diagnosed I've been in complete denial, kept thinking maybe it's not diabetes at all. However, had my bloods done this week and my c-peptide level has dramatically dropped, still not confirmed but now possible type 1 diagnoses.
I suddenly feel completely out of it, need to tell myself to start accepting this. I feel today like I should of felt 6months ago when this all began. I'm not sure now how to deal with all of this.
Hi Amy and @jenhop187 . Here is some info about MODY if you haven't seen it already:Your story sounds so much like that of my own, I'm so interested to find out your result, I have been going through all this since I was pregnant 18months ago and still not had an actual diagnosis, I have my next consultant appt next week and at the last one he said he wants to test for mody, I just feel all in a blur/denial with it all but it's nice to know I'm not the only one and I hope you may be able to take that out of this message also. X
I was the same with the insulin and fought to be taken off it (I think part of my denial) so am now on gliclazide which does seem to be working but my evening readings can still be high mostly double figures, I go back next week to discuss genetic testing for mody, my specialist nurse and consultant don't seem to have contact and kind of contradict each other which is a bit annoying. Where are you? I'm North west England xAmy6825 it's nice to know someone else is in the same situation. Seen my specialist nurse last week. She seems to think I'm still in my honeymoon period which is why I'm only needing small amounts of insulin. She is going to chat with my consultant to maybe change my insulin but I haven't heard back yet. What are you currently on?
I went through a really bad week where I was very upset, now I'm feeling much better but as soon as I get annoyed/someone annoys me then that just sets me off all over again!! I've heard people say the first year is the hardest, so hopefully once they know what's going on it might seem more normal!! X
Just my 2 cents worth... I'd be inclined to believe a consultant over a nurse as they have much more training. But there's no harm in asking either of them to explain their comments, then you have a chance at understanding why they differ.I was the same with the insulin and fought to be taken off it (I think part of my denial) so am now on gliclazide which does seem to be working but my evening readings can still be high mostly double figures, I go back next week to discuss genetic testing for mody, my specialist nurse and consultant don't seem to have contact and kind of contradict each other which is a bit annoying. Where are you? I'm North west England x
I did feel the same until the consultant said that if I don't have mody he gives up and doesn't know what I have, I have looked into going private but apparently it's the same consultant at the private hospital so pointless!Just my 2 cents worth... I'd be inclined to believe a consultant over a nurse as they have much more training. But there's no harm in asking either of them to explain their comments, then you have a chance at understanding why they differ.
Oh that's very unprofessional of him to think or say that. There are many, many types of MODY and it all seems very complicated to me. It's possible that there are rare types of MODY being discovered all the time, that only researchers know about so far. Here's another link about MODY if it's any help:I did feel the same until the consultant said that if I don't have mody he gives up and doesn't know what I have, I have looked into going private but apparently it's the same consultant at the private hospital so pointless!
Thank youOh that's very unprofessional of him to think or say that. There are many, many types of MODY and it all seems very complicated to me. It's possible that there are rare types of MODY being discovered all the time, that only researchers know about so far. Here's another link about MODY if it's any help:
http://www.niddk.nih.gov/health-inf...aturity-onset-diabetes-young/Pages/index.aspx
If you reach the point where you need to see someone else, it may be worth travelling an hour or two.
I don't know who I would ask to see someone different, I figured I would give him the chance of the genetic tests and see where that leads.That's awful of the consultant to say that!! I feel I'm quite lucky my nurse and consultant work very closely together on rare cases. They've even done quite a lot of research together. They told me dnt worry too much on not knowing what type it is, some ppl can take years to be diagnosed esp if it's really rare. They just said focus on managing it in my life. Still I hate not knowing and waiting around!! The stored my DNA in March to save for MODY testing. Is there any way you can request to see somebody different? X
You could call the hospital anonymously and ask who the endocrinologists are. If there is an alternative, then you could ask to speak to the nurse in charge of that department. I was able to change consultants this way once.I don't know who I would ask to see someone different, I figured I would give him the chance of the genetic tests and see where that leads.
Will give that a try thank youYou could call the hospital anonymously and ask who the endocrinologists are. If there is an alternative, then you could ask to speak to the nurse in charge of that department. I was able to change consultants this way once.
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