Sticky Blood-Hughes Syndrome Support
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Bladder weakness

Is there anyone else having bladder problems?

I have a complete bladder weakness been back to the doctors and they don't help. Anything else I can do? Tena Lady don't help at all :( I have embarrassing moments in the middle of the street too

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Hi Karen - You must go back to your GP and insist on a referral to a urologist specialist. This may or may not be gyny linked too. It is not good enough that you are being left to deal with this on your own. You may have to get tough and write to your Practise Manager, but you have a right to a second opinion.

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I will ask again

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Hello KarenOR. I understand your frustration. This situation had me wearing adult diapers/underwear - thank gawd for Depends (or I would not have been able to leave the house.) I had an ongoing bladder problem for many years but finally saw a good urologist 16 months ago. He put me on a medication called Myrbetriq (MIRABEGRON) 50mg. once daily. And I saw an acupuncturist as well. (She helped speed up the recovery.) Within 3 months the problem was resolved. I don't need the acupuncturist anymore, but the medication is ongoing. I hope this information helps. I am in Canada. If you live elsewhere you may need to look for the information on the medication. Best of luck.

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Hi Karen,

You have a difficult situation and I also wonder if you have got a Specialist which we need with this illness and if your GP and the Specialist are working well together?

I know you have told us you are anticoagulated. Is it with Warfarin and what INR has he put you on? Do you selftest also which makes it easier for you and I hope the INR is not too difficult to keep in the right level.

How are your children doing? Is your daughter 15 now or even older?

I do not know about bladder-problem but if the anticoagulation and Doctor-problems are not solved it is difficult to manage and get the right treatment for all our needs.

Best wishes from Kerstin in Stockholm

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Hi my daughter is 15 and still in care, she wants to come home. I am on warfarin but don't self test.

Bladder seems that it's not behaving, wetting myself even though I go loo about 20mins before

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Hi my daughter is 15 and wants to come home.

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Hi, I totally agree with my colleagues, you need to see a urologist, its embarrasing for you but there are treatments they can do, insist with your GP. xx

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I'm no MD, but aren't urinary problems like this common in MS? AND, doesn't APS mimic MS in many of its symptoms? It makes me wonder if your APS isn't being treated aggressively enough. It's a thought. Good luck. Nancy in West Virginia

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I have developed bladder weakness to the point that I had an accident right at work and standing up! There was no warning but there was extreme embarrassment, luckily I was able to hide in the janitorial room and wait for my husband to bring me a change of clothes. I have developed the problem with in this past year. Mornings are awful and I pray the bathroom is free every morning cause I am running as fast as I can! Don't have any answers to offer. I have not told the Dr. yet cause he will give me pills or tell me to wear the adult pampers. I am not ready for that!

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Spoke to my doctor she's referring me back to hospital and issued me with a urgent card means you can ask to use the toilet anywhere. Ordered depend pads too. Embarrassing but fixable

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Good - let us know how you get on xx

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You need to go talk with your doctor it's not embarrassing to them and pills are not the answer you need to be sent to the right department to help.

I was telling my physio that there is no embarrassments with this condition because your having to learn by the minute which part of the body is going to fail next. Doctors who shovel out pills without investigating the problem are lazy I find

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Hi Karen not sure where you are, but if you're in the UK ask to be seen by a continence nurse while you are waiting to see the specialist . I saw one and she was brilliant, I have transverse myelitis as well as Hughes so have issues with bladder and bowel. I have my pads on the NHS and they are delivered every three months. Wishing you all the best

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Hi all I'm booked in for an ultra sound and blood tests again. Beginning to wet myself everyday now which is embarrassing.

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Good, really glad you are getting tests done, hopefully they will find the cause and can do something to help.

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Me too because wetting myself is no fun, I don't want to be staying in home of fear of wetting myself or have to think of where the nearest toilets are, want to live life

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Yes I agree, its awful, everything takes ages to get answers, but well done you for getting this far - big hug x

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Hi Karen,

I am sorry life is difficult for you now.

We have spoken earlier you and me and I know you are on Warfarin and that the terrible headpain was much better when you started Warfarin. But you do not selftest and when you have so much around you now it is difficult to remember about the Warfarin also and how to test etc. Do you remember if your INR is steady?

I wonder if you still have your very nice GP and if he has referred you to a Specialist of autoimmun illnesses for your Hughes Syndrome/APS?

So very good that you have managed to get an ultra sound and bloodtests to be done soon.

Please let us her how it goes for you Karen!

Best wishes from Kerstin in Stockholm

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Booked in for a ultra sound to see what is happening. Pain in hips is getting worse too

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Hi again Karen,

When is the ultra sound taking place? Hope you can get it very soon as you feel as bad as you do. I am not a Doctor as you know , but I hope you do as much as you can to get an appointment asap.

My very best wishes!

Kerstin

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Hi I had the ultra sound on Monday night, full bladder wet myself while had scan done, thank got for incontinence pads, the chap could see my bladder emptying at a rapid speed on the ultrasound. I had taken a spare pair of trousers. He just said I've not seen a bladder empty that fast before, all he did was press down with the scanner. :(

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Hi Karen,

OK. That was fast. So now you are waiting for the result from the Doctor?

Could it be possible to selftest later on?

Kerstin

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Yes have to go next week. Also been told today I've got Fibromyalgia too.

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Why did your GP say that I wonder?

Could you be referred to a Specialist who have had patients with our illness before?

I think you should take a lot of bloodtests for autoimmun illnesses (not only APS but also Sjögrens and Thyroid and ev SLE)

Do you think you could ask your nice GP to order those bloodtests. I wonder because they say you have got Fibromyalgia and I have learnt here that sometimes it can be difficult to know what illness is what as they often go hand in hand and must be handled by a knowledgable Specialist.

Kerstin

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I've seen a specialist this morning, with the stress I'm under they said it's not surprising that Fibromyalgia has appeared too.

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Was that a Specialist of your bladder-issues or a Specialist of autoimmun illnesses?

I understand if you can not understand why I am asking all these questions but we have found here that they test Fibromyalgia and do not know much about autoimmun illnesses and when the patient take a bloodtest for the other autoimmun illnesses they find that it is Thyroidea or Sjögrens that may be the cause and not Fibromyalgia which is a very "uncertain" diagnose. A Specialist of autoimmun illnesses know about the "cousin"-theory that they can "hide" behing eachother and will give you a better outcome for a proper diagnose.

Perhaps even you bladder-issues could be better when you get the correct diagnose.

Kerstin

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No specialist in arthritis today see about my bladder at the end of the month. She said that the stress I'm under is the trigger for it.

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