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Your story & diagnosis?
46 replies to this topic
Posted 17 January 2008 - 02:52 PM
Aaargh! Don't tell me that. Well it'll be interesting to see what the xrays come back with tomorrow.
What's ANA again?
Posted 24 January 2008 - 11:09 AM
I haven't been diagnosed with anything yet, I have had sudden onset of symptoms that seem like rheumatoid arthritis - I presume that is the RA I have seen in this thread?
I am waiting on blood test results today and hope like hell it isn't what I have.
I was wondering if anyone who has it had the symptoms come on almost over night?
I have had intermittent pain in my right hip for years now and thought it was sciattica and now last weekend after two weekends of hard gardening (moving sand and soil) my joints started aching a lot and got progressively worse since then. I also had an unexplained fever a fortnight ago that may or may not be connected.
Anyway, not sure what I am asking except for sudden onset of symptoms - is that possible?
Posted 25 January 2008 - 10:19 PM
Lynnie, Yes, RA is Rheumatoid Arthritis.
My symptoms didn't come overnight, but often they were mild, so I didn't really think about it.
When I was young, I just 'got a lot of colds', and when I was older with some joint pain, I dismissed it as having worked too hard, bad shoes etc. It was only when I noticed constant pain, and had trouble walking that I did anything about it.
As far as I know it tends not to be a sudden thing, except when you haven't noticed, and then get a flare, when EVERYTHING goes off at the same time. It usually has a fever, sore skin and exhaustion at the same time.
If your doctor is testing for it, it doesn't mean you have it. It may just be caused by stress, and fevers can cause joint pain too.
Hopefully you get an answer soon.
Posted 27 January 2008 - 10:32 PM
Thank you Beth for taking the time to explain a bit more about it all.
I thankfully don't have RA which is a huge relief. The Dr said the symptoms were probably caused by overuse of my body which is really weird, I have never felt anything like it before, so many of my joints were inflamed. I thought my muscles would be sore if anything.
Anyway, the test was negative and I just have to take anti-inflamatory medication until the symptoms disappear.
I am in awe of anyone who does suffer from RA it is horrible. Best wishes to you
Posted 28 January 2008 - 10:24 PM
Lynnie - I have Palindromic Rheumatism that did come on overnight. I woke up with a bung index finger and I thought I'd broken it and didn't realise .
Anyway PR is 30% likely to develop into RA so get your GP to refer you to a rheumy if your symptoms don't go away and the RA numbers are -ve.
Posted 12 February 2008 - 09:48 AM
Hello thought I would just pop in and say hi
I have Lupus, RA and Fibromyalgia...was diagnosed 18 years ago and still find most days a battle.
I have a very supportive husband and a teenage son at home.
I am currently taking way too many medications for my liking (including self-administered injections)but have come to realize that if I don't give in and take them then my days are even worse.
I look forward to getting to know more of you.
Gentle hugs. T x
Posted 18 February 2008 - 01:20 PM
I have just been diagnosed with an inflammatory Arthritis which the specialist thinks in Psoriatic Arthritis - despite the fact that I have never had psoriasis?? I have had a previous flare up 7 years ago where I had arthritis in my hands and hips but after 3months it just disappeared.
I guess I am still wrapping my head around the implications of the disease. The last 6 weeks have been a nightmare! I can't really walk so my mother has basically moved in to help me care for my 2 boys. At the moment the pain is in my neck, both knees and my left elbow. It is excruciating!!!
I think one of the most frustrating things has been that no-one at all seemed to know what was going on. I tried 2 GPs, 3 physios, and one osteo.. each time ending up a complete mess for 4 days after treatment. It wasn't until my fantastic GP came back from holidays that he noticed I couldn't walk without a walking stick!!! and asked me if anyone had recommended that I see a rheumatologist.
The rheumatologist has recommended that I take a small dose of prednisone daily till it settles down. Is anyone else taking this? I am breastfeeding and a bit worried about the health risks for my son... and the horrible side effects for me! Everything I read says it is OK to continue BFing but I have been reluctant even to take panadol for fear of effecting him... I am going to work towards weaning him anyway in case I need stronger drugs but would prefer him to self wean.
I hope that you are all having an OK day.
Posted 24 February 2008 - 03:40 PM
I have Rheumatoid Arthritis (RA) and Lupus (SLE), both of which I had during my pregnancy and for the last 5 years or so. I struggled after having the kids as I'd had to go off many of my medications. I ended up stopping breastfeeding and taking the steroids when the kids were about 9 weeks old. It was either that or not be able to care for them at all, and with twins you need as many able pairs of hands as you can get! I think that at the time the only distraught one was me! The kids couldn't have cared less It was a heart-wrenching decision, but I'm glad I made it as I was also struggling with post-natal depression.
Good luck with the breastfeeding, and I hope that you find a way to ease your symptoms a little.
Posted 17 March 2008 - 06:55 PM
Hello my name is Rhiannon and I have an genetic disorder call Incontinentia pigmenti http://en.wikipedia.org/wiki/Incontinentia_pigmenti which has cause my mild cerebral palsy which actually infects only my right side. I have limited movement in my right arm/hand and my right foot turns in when I walk.
I'm not a mother right now but I'm just a little worry about passing Incontinentia Pigmenti to my kids because it's a chance that I will.
I do worry that my kids will have a serious disability if they do get Incontinentia Pigmenti. This is why I am posting here.
Sorry if this is in the wrong thread.
Edited by rhi-ann-on, 17 March 2008 - 06:59 PM.
Posted 10 April 2008 - 02:36 PM
Hi to all the amazing previous posters! I have read every post and am inspired by you all and in awe of you all.
I was diagnosed with Facioscapulohumeral Dystrophy (FSHD) in August last year. Two of my brothers had previously been diagnosed so while it didn't come as a shock at the time... I think there was delayed shock!
I don't know where I am on this list:
I definitely went through denial and depression but I don't know if I've done anger or bargaining!
FSHD is definitely not as severe as some of the things other people here have to cope with but it can be debilitating. I don't know what to write but I wanted to join in and be heard. I have difficult days and I have days when I'm not sure if I'm just blaming stuff on my FSHD and am just being pathetic. Maybe I'm still in denial?
My children have a 50% chance of inheriting the condition and although we already have 2 boys (ages 5 and 3) DH & I are going to be doing IVF Preimplantation Genetic Diagnosis (PGD) this year to have another baby so that the condition is not passed on.
Lovely to meet you all.
Posted 07 May 2008 - 04:41 AM
Hi i am a newbie here. My name is Rosalie and i have a few different illnesses. I was firstly diagnosed with nephritis at age 16 thankfully recovered about 1 yr later. But it affected my health bp wise etc.. from that point and my kidney specialist tells me it can come back at any time. I was also diagnosed wih hypothyroidism after my son was born.
Lastly due to issues in my pregnancy with my daughter i also have chronic pyleonephritis which is the hardest of my issues.
Posted 30 May 2008 - 06:18 PM
damn, Damn, DAMN.... didn't want to have to add myself in this list here but here I am.
After several episodes dating back to 1999 I have today been diagnosed with relapsing remitting MS. My nuero was holding back on making a call because all my previouus episodes occurred while pregnant.
Posted 02 October 2009 - 09:03 AM
I think i belong here....
I have a Cavernous Malformation which is an entalgement of viens in my brain and i also have a blood clotting disorder. Both these issues became apparent in my first oregnancy when i had a brain hemmorage at 36 weeks. I then developed a DVT in my left one day post partum. It has been i wild ride with surgeries etc but i feel lucky to be alive and truley blessed. My daughter is now 9 months.
I take warfarin daily and have my own INR machine which has been great. I have another brain scan in december so fingers crossed i dont need brain surgery.
This whole experince has made me feel lucky. I have great family support and i know live every day to its fullest.
Just wanted to share....all your stories are inspiring!
Posted 10 March 2010 - 06:14 PM
Hi and thanks for the stories.
I have been read posts in here for a while but have been too scared and still in denial how bad my condition is.
final after 20years of off and on hip pain, that has now progressed into constant pain. I got a diagnoses of labral tear in both hips. At this point surgery is not an option.
Life has been hard for the last 12 months. and I have been having a bad reaction to the pain meds.
this have to get better from here
Posted 07 January 2011 - 10:03 PM
Hey, add me to the MS list! I will be brief, but here is me in a nutshell.
Diagnosed- October last year
Prognosis- Good (as long as I don't have more kids) Not sure how I feel about that yet...
Symptoms- Sudden fatigue, loss of muscle power, short term memory loss, a more focussed view on life, occasional tingling in hands & feet, and anxiety (no depression yet).
Biggest Winge- Those bloody injections! And people who judge me for parking in the seniors spots.
Drugs- Betafuron every other day.
Guilty pleasure- My Chiropractor , Coke (cans of).
I love to have a laugh, so just letting you all know that I have a well developed sense of humour. Serious does not suit me very well
I would love the opportunity to chat with other MS mums. My DD is starting to get the idea that running away from me is fun...ohhh dear!!
I will (if I remember...) post a fluffy version of this post later.
Nighty nighty, sleepy tighty everybody
Posted 18 February 2011 - 07:01 PM
I just want to extend a BIG HUG out to everyone else on the forums...I don't really know what to say to make anyone feel better, but I will keep you in my thoughts.
My story is that I had kidney cancer when I was two. They removed one and 3 years later, after two cycles of chemo and some radiation I was cancer-free and have been healthy ever since.
Even though I won the battle with cancer, it did leave me with chronic kidney disease. I have been living for 20 years off a single failing kidney and am proud of that.
Growing up, I felt that my life wasn't much different from my friends, except that I took medicines and saw the doctor more. This changed about 4 months ago, when my DH and I decided we wanted to start building a family. The doctor I saw gave me the oh-so-kind advice of "I recommend you never (ever) get pregnant (in your life)." He then went on to explain that if I got pregnant now, my kidney wouldn't last the pregnancy and that I would have to go on dialysis during the pregnancy. The baby would have a slim chance of survival and it would be born premature.
It was a huge slap in the face for me. Though I had been told that being pregnant might be difficult, I have never thought that it would be as complicated as this. It really put things into perspective, that no matter whether I choose to ignore or obsess over it, my kidney will fail someday and my life will change drastically. My parents are both matches as kidney donors, but we haven't talked about transplantation in many years. I've started reading medical journals and articles, trying to educate myself about CKD, End-stage CKD, dialysis, transplantation and the like. Honestly, ever since that doctor's appointment I've started to see myself less as a healthy person and more as a patient. Last week my doctor said that in worse-case scenario, my kidney could fail in 5 years. As sick as it sounds, sometimes I wish it would come sooner so I wouldn't have to wait around and think about it.
My obsession with having a child hasn't really gone away, but I've had to face the reality that it is on hold and it's hard to think about. I will go into that another time however....thanks for reading
Posted 14 April 2011 - 11:22 PM
I have polycystic kidney disease. Basically it is a hereditary condition that my mother passed on to me. Cysts are growing on my kidneys reducing there function. No one can say how long it will take for my kidneys to completely fail but unfortunately I am getting closer to this stage. I will then go on dialysis or have a transplant if my husband comes up as compatible.
How did I find out. As its hereditary I went and had an ultrasound when I got married as we wanted to have children. They discovered that I did have the disease but it was only very early days so we went ahead with having children. I have a DS who is 8 and a DD who is 6. I also had another pregnancy which I lost only a couple of years ago and this seems to have sped up my kidney disease.
When I had the initial ultrasound they would not tell me anything but I could see them measuring things and I new I had it. I went home and cried like a baby. I think mostly I'm just scared after seeing my mother go through the dialysis for years and years and then the transplant.
I have regular pathology and visit the specialist now every 3 months and every time I see him I go home in a bad mood. Its like a ticking time bomb and I'm just waiting for it to go of.
Posted 24 April 2011 - 09:39 PM
well thanks to Dani I am here.
I have recently suffered my third case of pulmonary embolism in my right lung. They now know when I was 10 weeks pregnant with my last child Samuel that no, I did not have pneumonia with a pleural effusion but that there was a clot most likely there too. It resolved and I again had the same symptoms at 25ish weeks.
Feb this year I presented with the exact same symptoms again-had an xray=nothing but doctors could here a pleural rub (effusion) and the pneumonia again and so did at CT scan and following CTPA scan and found I did have clots in my right lung.
I was put on clexane and warfarin immediately.
I have been tested for thrombolphilias and others and have had three positive tests for lupus anticoagulant which is an antiphospholipid antibody. I have also tested positive for anti ro/SSA antibody and have had extreme fatigue, joint pain, pins and needles since about October last year.
I am still in the process of finding a specialist who can shed more light on the anti ro/ssa antibodies. I will be on warfarin for life due to the pulmonary embolisms. It is too risky for me not to be on warfarin. I have been told not to have any more children as I am lucky I did not die during childbirth etc
I have been back in hospital 3 times this year so far and my INR is proving hard to stabilise at times (mostly due to stupid hospital doctors thinking that my warfarin dose is too for their liking, reducing my warfarin and having my once stable INR plummet and putting me at risk of clots). So I am on 3 daily blood tests atm but thankfully no clexane.
Oh I have had lichen scelerosis for the past 10 years Woe is me
Edited by Rough-Diamond, 24 April 2011 - 09:53 PM.
Posted 27 April 2011 - 11:54 PM
This seems the place to put my story. I have Devic's disease. I'm probably the only active member with this diagnosis. It's a demyelinating disease similar to MS, perhaps even a subtype, but does its damage in the spinal cord and optic nerves.
I first fell ill through 2004 with strange transient neurological issues - painful neuropathy, electric shock sensations down my spine, leg weakness and paraesthesias in my arms, hands and legs. I was able to ignore all this until I lost the vision in my left eye. I had an MRI of my brain then, and again two months later when I had a second optic neuritis attack. Nothing showed up on the scans, but my physiological examination was quite off - pupillary defect and brisk reflexes with clonus. The neurologist said it could be MS but there wasn't enough evidence to diagnose it at that stage. Gradually my eyesight recovered and the neurological issues became no more than minor irritations. I didn't like not knowing what had happened but at least I was ok again. I carried on with life.
Then mid-last year my vision deteriorated again. I saw an ophthalmologist who ordered an MRI, and lo and behold there was a whopping great lesion on my left optic nerve. Long tract lesions were found on a subsequent spinal MRI ordered by a neurologist. After 6 years of limbo I had my diagnosis within a week of seeing someone.
As I am well and clinically stable I am not on any treatment. My vision has stabilised, though I have poor depth perception and difficulty tracking moving objects, so no driving for me. There's been an increase in the painful neuropathy in my arms and hands but I know it could be a lot worse. Mobility-wise I am very fit and active, and I'm very thankful for that because who knows how long that will last.
Sorry if this is overly long, I've never really told the story in its entirety before. The diagnosis is still relatively new but at least now I know it wasn't all in my head.
Posted 26 April 2013 - 01:08 PM
I am probably here a bit early since I am only 4 months pregnant with my first child but it is heartening to hear about all of your amazing strengths. I was hit by a car a few years ago and have been struggling with chronic pain throughout most of my body, particularly my hips, knees and R) arm, plus chronic fatigue and mobility problems. I think one of the biggest issues for me to cope with is my loss of independence and how much I need to rely on my husband considering I am unable to drive or work right now, so spend most of my time at home.
My husband gets so angry at the woman who was driving and the fact that she gets to walk away without anything more than a fine and that I will spend the rest of my life in severe pain, all because she was in a hurry to get home and not paying enough attention to a pedestrian crossing. I am not sure why I don't get as angry at her myself, maybe I stop myself from going there deliberately because it would be too self destructive and I am angry enough at what has been taken away from me as it is. It is harder to deal with all of this because my family lives a long distance away and don't see what it is like every day and my husband's family are more inclined to believe my issues are more out of laziness and choice than an actual medical diagnosis.
At the moment it is a matter of taking it a day at a time and hoping for the best, I have definitely been incredibly lucky with so many things, I am still here and my husband is fantastic and finally getting the chance to start our longed for family. Thanks to everyone who put their story up here and giving me a chance to get a few things out
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