Author Topic: Finally got diagnosis  (Read 6988 times)


  • Guest
Finally got diagnosis
« on: April 16, 2008, 07:04:43 AM »
Hello everyone,
Its an awfully long time since I first wrote on here, at that point I was trying to get a diagnosis, well about a month ago I was finally told that I do have Sjogrens.
I haven't been on the forum for a while because I have been feeling so bad (which seems a bit silly!) Since last  posting on here I have been struck down with the most awful bladder pain, it feels like I have got constant cystitis and it is driving me mad!!!!The only time its not hurting is when I first wake up in the morning,and believe me if I didn't have to get up for the Children I wouldn't bother anymore! My consultant has sent me for a kidney and bladder scan, but the woman who did it sort of indicated that there was nothing found, so I haven't even bothered to phone for my results, there doesn't seem much point.
On top of that my teeth have all started to crumble and fall out, even my trusted crown (one of my two front teeth) has come out and my dentist says he can't put it back in because all the roots have rotted.He is having to refer me to a hospital because my consultant advised that I am too ill to have the treatment done at a regular dentists,with my lupus etc and I just found out yesterday that there is an eight month wait to see the oral surgeon!
I have been told that I have a iron level of 4 but I can't tolerate the iron pills they have given me so am not taking them. Other than all that I am o.k!!!!!!
Sorry to come back on such a negative note, but this constant bladder pain is making me so irritable and miserable.
Hope everyones doing as well as possible


  • Guest
Re: Finally got diagnosis
« Reply #1 on: April 16, 2008, 08:39:01 AM »
when you say bladder pain it rang a bell with me.  I have has the lower belly pressure pain for yrs and it kills.  I have been to the kidney and female doctor for them to find nothing.  I know occassionally I will get constipated and when the bladder and that kick in on the same day it's hurts so bad I can hardly walk.  For me getting in a hot bath seems to let up some of the pain but only temporarly.  Hope you feel better soon and welcome back.


  • Guest
Re: Finally got diagnosis
« Reply #2 on: April 16, 2008, 09:26:02 AM »
Yes know what you mean, it is definitely worse when you haven't been to the toilet for a while!!I don't know what it is, but it hurts and niggles all day, every day. Don't you wish family members could jump into your body just for an hour or so to see what it feels like to be you! I'm sure mine are sick of hearing me saying "ooh my bladder hurts" I just wish they could be me for an hour to know that I am not making a fuss about nothing. Every time I have been to the clinic they have found blood and protein in my sample, will be interesting to hear what they have to say next month when I go.Have heard people mention intertestinal cystitis (probably spelt wrong) wonder if its that?


  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9224
Re: Finally got diagnosis
« Reply #3 on: April 16, 2008, 09:38:58 AM »
Hi Rosie  :)

Good to see you again. I'm sorry you've been having such a bad time of it. If you've had tests - I'd ask about results and see what they say. I've had some bladder tests recently and not a lot showed up but there was some stress incontinence and a dx of Irritable Bladder. I've being sent to a physiotherapist to see if they can help.

If you can't tolerate iron pills - how would you be with iron shots? I know it's another way of giving someone the iron they need.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!

aussie mum

  • Hero Member
  • *****
  • Posts: 604
Re: Finally got diagnosis
« Reply #4 on: April 16, 2008, 03:53:10 PM »
My daughter is currently trying a liquid iron supplement called Floradix, she mixes it with juice. She has only been using it for a couple of weeks so I'm not really sure how well it works yet. You may be able to tolerate this formula as it is made from natural ingredients. It is made in Germany by Salus-Haus.

Hope it helps.

Aussie Mum
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D


  • Guest
Re: Finally got diagnosis
« Reply #5 on: April 16, 2008, 05:28:21 PM »
I would like to reply to a couple of things you mentioned and share what worked for me, if you don't mind:

1.  first - the low iron.  It drove me nuts (because it really affects restless legs as well as well as it gave me benign heart flutters).  You mentioned kids, so if you are pre-menopausal and still having cycles, then maybe consider an endometrial ablation (they insert a balloon and parbroil the lining of your uterus) and it burns off the lining of your uterus.  My iron level now is the best thing about me.  There has been one hold up - I have no way of knowing when I am going thru menopause.  Last summer, blood work showed I was still pre-menopausal and I'll be 55 this summer so...)

2.  I believe I have an irritable bladder and for a long time I thought it was an over active bladder.  But none of the meds for that condition worked for me and my gyn always give me a list of bladder irritants every year at my checkup.  Believe it or not, cranberry does irritate the bladder!  I get a little speech every year and I don't even eat cranberries or drink the juice (so I figured that while cranberries are good for the kidneys, they sure must be bad for the bladder).  But to battle the bladder irritation that gets quite irritating, I get some relief from AZO which is a bladder analgesic bought over the counter.  Maybe you could try it (but get the plain without the cranberries - they make it with cranberries).

Maybe one (or both) of these might help.  Sure hope you get some relief.  That low iron especially.


  • Guest
Re: Finally got diagnosis
« Reply #6 on: April 16, 2008, 06:27:58 PM »
I have abdominal pain, sometimes so bad I can't bend at the waist.  It feels like labor pain.  At first I thought it was a GI problem, but when I sat on heat, the pain left.  As it turns out it was from my neuropathy.  I am awakened at night occasionally with horrible pain, like my entire trunk from the waist down is in spasm.  One night I was ready to call 911 thinking it was something terribly serious.  I managed to take an extra Neurontin and the pain finally left.

Point being, sometimes pain is due to faulty nerves and it is not an organ at all.  If all your tests come back normal for bladder or bowel, consider the possibility of neuropathy which is very treatable!

Good luck.  Pain just takes the joy out of live at times.  But  you can be helped!

Good Luck!


  • Administrator
  • Hero Member
  • *****
  • Posts: 5178
Re: Finally got diagnosis
« Reply #7 on: April 16, 2008, 06:44:10 PM »
Rosie, I'm concerned about your low iron, levels that low can be detrimental to all internal organs, but most importantly cause extra workload on the heart and lungs. What are your hemoglobin levels with this low iron?

There are many iron supplements available, and different people tolerate them in different ways. Some find ferrous gluconate easier to take, while others prefer ferrous fumarate, but for some reason, most doctors automatically go to ferrous sulphate, which is probably the most difficult to tolerate. You didn't mention the type you have, but it would be worth your while to try some of the others, until you get something you can take.

Please be sure that your doctor knows that you haven't been able to take the supplement he ordered.
Please check out our home page at {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at


  • Guest
Re: Finally got diagnosis
« Reply #8 on: April 17, 2008, 01:28:10 AM »
Thanks everyone for your replies and words of encouragement and brilliant advice! I am my own worse enemy I really am...When they found the iron stores where so low they put me on tablets which immediately made me feel very sick, a couple of months went by and I thought heck, I better go and tell the G.P I couldn't take that iron, so he then put me on this medicine..Galfer syrup.I took one or two doses and it was disgusting and made my acid reflux go mad! so that bottle went in the cupboard along with the tablets! Its another couple more months down the line now and I must say I am not feeling too good!Palpitations, rapid pulse, but on the bright side am sleeping better than I have for years!
Apparently at the beginning of all this my hemoglobin levels were acceptable, but don't know what they are like now.
I am really bad at looking after myself, maybe I am a bit depressed at the moment I don't want to be seen in public until my teeth are fixed so have become a total recluse.sometimes I try and think when I last spoke to another adult and it can be weeks, and then its just usually someone at the check out in a shop.I have no friends, my family live far away, and I just live for my two boys aged 12 and 14
I know I need to kick myself back into touch, but its so hard when you can't even smile because your teeth look such a mess. I know at the end of the day its a vanity issue, and I shouldn't be so shallow, but I can't bear people looking at me.
I did something positive yesterday I phoned the oral surgeon secretary and said I couldn't wait till August to be seen, I said it felt like I was being punished,its like a vicious cycle all the time, the sjogren's caused my teeth to drop out because of lack of saliva and it being so long to get diagnosed. your then told that the disease caused your teeth to crumble away, you go to the dentist who says the consultant has told him he's not allowed to fix me because I need specialist treatment because of all my illnesses, you then get told you have to wait 8 months to see that specialist who can fix your teeth, so basically because your unlucky enough to have the disease, you then have to wait longer than everyone else to be fixed!!!Can't these people give us some sort of priority, its not our faults that we have Sjogren's! Anyway the secretary said I was on a regular list and that if my dentist wrote and asked for me to be treated as an emergency then I might only have to wait a couple of months, so I have done that.
Probably the iron is due to the fact tat my diet is so crap cos my teeth are so bad I live on a diet of soft foods, and can't eat fruit and veg! Its all such a mess!!!
Sorry to moan on (again) I am not usually such a negative person honestly!
Thanks for all your help, and I will keep away from cranberry juice in future!!
All the Best
Rosie x


  • Guest
Re: Finally got diagnosis
« Reply #9 on: April 17, 2008, 08:51:49 AM »
Hi Rosie,
Welcome back.  So sorry to hear you having such a rough time of it.  I hope things start to perk up soon for you. 

Hugs, Pooh