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laurabg

Registered: Sept 15, 2010
Posts: 287
Reply with quote  #1 
Hi Guys

I've been away from the site as I felt it wasn't IC related and frankly I felt lost.
Any way just wanted to let you all know that I've been diagnosed with Ehlers
Danlo Syndrome. I have an extreme form of it but its not clear which one.
He thinks its worse than III.  Why didn't I ask for more tests.?
My consultant clearly didn't know what to do other than offer pain relief

Ehlers–Danlos syndrome (EDS)  is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue - usually Type I and III). The collagen in connective tissue helps tissues to resist deformation. In the skin, muscles, ligaments, blood vessels and visceral organs, collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems.

I haven't been offered anymore tests and actually I was numb from the appointment.  It was private so theres no obligation of care.
Now I've got to go back to the Gp for help and guidance. I'm so worried for my kids.  I'm also worried about taking so much time of work for appointments.

No wonder my bladder stretch went so wrong.
No wonder my bowel,bladder and vagina have prolapsed.

Im getting mixed growth MSU for the last 6 months.  Before they where clear.
I don't see my urologist till August.

Other stuffs going on like constantly being low with Vitamin D.  I'm sure a few members have had this.  He's put me on a large dose for 3 months then a re test.

Any way take care

Laura

anita

Registered: Aug 28, 2004
Posts: 247
Reply with quote  #2 
 Dear Laura

I am sad to hear about your diagnosis, I know you have suffered so much, it must be hard to take in. When you say it was private so there is no obligation of care, I am not sure what you mean, did the consultant not offer anything regarding what to do now, you mention treatment being supportive.

Just want you to know I am thinking of you.

Love

Anita


laurabg

Registered: Sept 15, 2010
Posts: 287
Reply with quote  #3 
Hi Anita

I hope everything is going well with you.  Has your pain got better?
My Gp practice have been so unsupportive.  They only seem to care that the drugs i'm on are cheap.  I went private as my firm have medical insurance but this has caused problems.  I see lots of people but there's no central person helping apart from me.  Its so hard to get a GP appointment and when I do get one its so rushed.  I just feel exhausted from it all. What I'm feeling I'm sure most of us have felt like dealing with IC.  He's writing to the GP with a list of medication for my Raynauds which has got quite bad. The VitD was never checked well enough and my thyroid treatment just isn't working.  So I'm hoping all these things will help me feel less pain. The thing I'm really struggling with is my urethra and bowel. I'm sure its because its being squashed.  I can't eat probably and my bowels just don't work. 
I'll write everything down fro the GP and give it to them. Then I'm not going to forget.  I'm getting quite cconfused at the moment.

The diagnoses has just added an extra layer of worry when it comes to operations.
With the higher risk of tearing, heart trouble which I have had in the past then throw in the drug allergies on top.  Well I don't think I can make that decision.
The neurosurgeon wants to do a disk replacement and I really need my prolapse doing.

Good news is the VitD I took whick is a huge dose which I take once a week hasn't given me any trouble.
When I mentioned supportive I mean't there's is no cure just pain etc management.

Any way hope it does get sunny again

Take care and so for the ramble

Laura
JaneW

Registered: Dec 3, 2003
Posts: 1,447
Reply with quote  #4 

Hi Laura,It must have been a shock to finally get a diagnosis after so long.I hope that something can be done to reduce the pain and at least keep the condition as stable as possible.I'm thinking of you.I was wondering how you were getting on.Take care,Love Jane XX

anita

Registered: Aug 28, 2004
Posts: 247
Reply with quote  #5 
 Hi Laura

Like Jane I reallly hope that you get some help to improve your quality of life. I so admire the fact you are still working when you are suffering so much. It is so frustrating that you are not getting the support you need form your Gp practice, everything being a battle is so draining.

I am having a nerve block done on Tuesday.

Take good care.

Love
Anita
laurabg

Registered: Sept 15, 2010
Posts: 287
Reply with quote  #6 
Hi

Good luck Anita for Tuesday.  I really hope you get some relief.  Lets us know how you get on.
Jane how's your mum doing?  I hope your well and getting a break.
Did you have any luck with your VitD I don't understand I've been taking supplement for a couple of years and its not worked. 

At Guy's next week for my drug challenge.  I hope it doesn't effect the IC as most things seem to.

Take care and thankyou

Love
Laura

JaneW

Registered: Dec 3, 2003
Posts: 1,447
Reply with quote  #7 

Hi Laura,Mum's recovering slowly from her mini stroke.I'm still taking vitamin D but need to find out what my levels are now.I'm due to see a new neurologist in August as my walking and balance have gone a bit strange lately.What does your drug challenge involve ? Can I ask what dose of Vit D you are taking ? Take care,Love Jane XX

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