Undiagnosed for 17 years

[shefab]

I have been sick for 17 years with an undiagnosed illness. I am not feeling well, so I won't go into all the details of my illness. In fact, Im feeling so poorly physically, intellectually and emotionally that Im finding it very difficult to write this.

I have a sister who is 5 years younger than me. We both got sick at 38. In the Winter of 2016, she had two strokes. She's been diagnosed with APS and Sneddon's Syndrome. She is a more likely candidate for stroke than I am. We are very different but we do both have Livedo Reticularis and Raynauds. My doctor hasn't seemed concerned at all and I guess I've been denial about it.

I really started to worry, when for the first time in my life my feet turned dark blue in the shower. The right foot had a big white blotch on the top of it. It was right above a couple of warts, I've been trying to get rid of. I have Raynauds so I'm not unfamiliar with my skin changing color, but it's never turned blue when hot. I also have a lot of loss of feeling in different parts of my body. I often feel like my arm and leg is not getting enough blood. Especially on my right side, where I have a lot of pain in my hip. Worried I googled stroke. I found CVT and intracranial hypertension.

When my illness first started, it began with episodes of severe pain in my head and neck area, along with many other symptoms. When I found intracranial hypertension, I found a list of symptoms that mirrored the ones I suffered in those episodes and some of which I suffer from today. I still can hardly believe it. After being sick all this time, to just see those symptoms in writing was really surreal. I also discovered Avascular Necrosis, which could be the reason for the pain in my hip.

If I really have this illness I feel like I am doomed. Though Canada has Universal Health Care, its not free for all of us. After I lost my family doctor in 2008, I was unable to find a replacement. At the time, I belonged to a PaIn Clinic, but was force out in 2016. I signed up with a private clinic and started paying for my healthcare. I dont think paying has improved my health care that much. I was able to get testing for INR and one of the antibodies through my family doctor. All the other tests have to be ordered by specialists. No reumatologist will see me because I test negative on ANA test. None of my tests, come back with results that would allow her to send my to a hematologist or neurologist. Apparently, I cant get the tests I need unless I have a miscarriage or have a stroke. I havent even told her about the IH or hip thing yet, but I know it wont go anywhere. She does things to humor me but doesnt really go out of her way to find different avenues to help me. I have to initiate everything.

This thing has become so stressful for me, which I think is why Im feeling so poorly. I go to the internet to get comfort that my symptoms are not stroke related, but then find all the symptoms fit me like a glove. Stress is poison to me. Ive spent 17 years avoiding it at all costs. Now my sister, who I have no relationship, stressed me out before she had her strokes, messages me weekly with all the details. Today she left a message informing me that my younger half sister just had a stroke. Im not sure how that works, since I thought it took both of our parents to get this disease.

So the reason I write this post is to find a specialist in Canada who specializes in APS. I need to get some peace of mind or I might have a stroke. Thats not an option for me. Ive been isolated for many years. Theres no one to look after me, and if there was I wouldnt want them to.

[MaryF Administrator]

Hi and welcome, please see our charity website here: ghic.world/ You will see specialists on there, so that is a path to better help. Also you will find on the site the blood tests required. The ANA test is one used for autoimmune disease including Lupus. The ones for Hughes Syndrome/APS are different. I would also look at your vitamin D, B12, Iron and also your Thyroid, beyond just the TSH test.

Livedo Reticularis is a definite flag for this syndrome. Please have a very good look through the charity website above, it contains a lot of useful information. You are not alone, many on here have been failed in terms of diagnosis for a very long time.

It does not take two parents to give this disease to you, at times it does not take any parent at all. However my sisters have it, plus my brother mildly, and all my children are affected. Your sisters need help also.

MaryF

[Fra22-57]

All worry makes you worse and without getting proper diagnosis you will think you have many diseases that you haven't. Mine pointed to MS but thankfully was not.You need to write all this down in bullet form and take this armed and stress you need to know.Also print papers off from the GHIC website that state you don't need blood clots or miscarriage to indicate APS.I am only one in family past and present with APS.

[Salstar]

Morning Shefab, General medical Doctors are so busy I feel they have no time to left to read the leaflets that the APS site gives us to educate them. They are so stretched in a ten minute appointment system that no time is a normal on the UK NHS system.

I so feel for you, the unknown can make one more anxious and thereful stressed. Something sufferers need to avoid.

I am so pleased I read your post as I have awful problems with my right hip. With other health problems some of my conditions are blamed on each other, TIA’s leg giving way, bulging lower disk, endrometus- new condition, still not aware of self help solutions.

This site gives so much hope and positive information on a condition that is so unconditional still being studied.

Followed you to get your osts - you are not alone and this site helps knowing that in the strange happening within our bodies that no one can explain.

😇keep your chin up

[lupus-support1 Administrator]

I am sorry you have been unwell & hope you will find help and support here.

Levido reticularis is seen in systemic lupus erythematosus (SLE). Just because you are ANA negative does not mean a patient doesn't have SLE, since there are lupus variants. This is called "Sero-Negative." I am NOT suggesting you have SLE but suggesting your doctor have not be expert. Not all rheumatologists are expert in SLE or APS/Hughes. Approximately 25% of SLE patients have APS/SLE.

Therefore, you must see an expert rheumatologist.

I recommend you go to the GHIC website (see below).

With good wishes,

Ros

[dchandler7]

i am not sire if you got the help you need, I have gone through alot only a 4 month span but I am shocked how messed up the alot of doctors are in canada. Most family doctors I have heard and experienced are to slow and useless, so you have to do things yourself. I have been very ill trying to get a diagnosis and I have learned, from others who have severe health problem and myself. You can go to any emerg hospital, don't tell them much and exaggerate your symptoms to sound like your severe bad health and need to see

reumatologist , they will hook you up fast..make sure you pick a hospital that has one it, or another option go to any walkin clinic, tell them your symptoms and they will refer you no prob. you should get immediate help, i am sorry your so ill so long. Also if you go to any emerg not well, say you have no fam doc they usually hook you up with a specialist fast realted to your symptoms. I have seen alot in 4 months because some are useless and its hard to get proper care and tests with free healthcare