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Old 05-30-2017, 09:46 PM   #1
kell.steve@bigpond.
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Join Date: Feb 2016
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Default Undiagnosed

I have been undignosed for white matter change other neurological symptoms for the past 2 years and am starting to get desperate, I am not sure what to do.
History - 5 years ago, my menstral cycle started to go crazy, often only have 2 cycles a year, sometimes none at all, after always been like clockwork my whole life. With this came lower back pain, especially early mornings, my legs become restless and i need to get up and get moving to ease it, I also wake up hot, and often get hot flushes. My hormone levels are fine and I am not in menapause. I was sent for ultrasound on my ovaries, and even though they could not view one, they deemed everything all clear.

I had a bone density test that shows arthritis forming in shoulders, knees and ankles.
I have reflux.

3 years ago. I noticed I didnt feel well all the time, and started to get alot of mild headaches. I was diagnosed with fatty liver and sleep apnea. (i am obese)

2 years ago, I noticed my memory was not so great anymore, my muscles were waisting and I was becoming weaker. Headaches continued despite using cpap, although the type of headaches changes. sometimes feels like a band around my head, other times its like a cracking sensation, or popping like sounds, or like wooden floor boards creaking. On two occations i had (while doing aerobic activity) a shape knife in my head like sensation. I went to the doctor about this and they sent for MRI. MRI showed multiple white matter lesions.

I was sent to a Neurologist.. on clinical examination she said I showed no signs of MS - as I was worried about this. She ordered a more in depth MRI
She told me this did look more like MS, gave me a MS Pack and registered me, then sent my details to MS Connect who rang me and asked me if I had any questions. My neurologist sent me for a lumbar puncture. This showed 15 lymphocytes, normal protien no o bands. She showed my MRI to her professor, who said my lesions were not suggestive of MS, my lesions are not perpendicular to the corpus callosum and they are more rounded, but i do have slight hyperintesities periventricular (no idea what that all means) She then tested me for visual evoked potentials - which were normal. TB HIV and CT angiogram were normal. Serium ACE and heavy metal were normal.
I cant find results, but apparently I did have a positive speckled pattern of ANA but without a positive ENA and my double -stranded DNA was borderline at 6.

I was put on steroids for 3 months then weaned off. Repeat MRI and repeat lumbar puncture. NO further lesion progression, CSF back to normal. ANA test negative.

12 months later the same. MRI stable, CSF normal. ANA negative.

Gastric Sleeve operation - 30 kgs lighter - still 20kg to go.

I am however, still getting chronic headaches, ringing in my ears. every joint and muscle hurts and is getting worse. Every bone cracks . I am still without periods, and pain everymorning with flushes. I get sore eyes and blury vision that comes and ges. Pins and needles, random cold fingers. weakness. I get jaw stiffness, my glands have been swollen for months, sometimes i get chest pains, and when I get flushes my heart seems to pound.

My neurologist is away on maternity leave and her replacement, told me he thinks I am just after a serious dignosis of some sort and at this stage he cannot help me. I was meant to go back this month for another MRI but I told him to go to hell.
My other neurologist who is on maternity leave, and my local gp give me the impression they think I am depressed, making stuff up and dramatising everything.

I am not. I am so scared by the time they figure out I am not, it will be too late.
I live in a small country town. Limited Doctors and neurologists. they all talk to each other, my records are all under the hospital. To get a fresh opinion, I would have to travel 6 hours away. Should I be worried? or should I trust them and just get on with life?
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Old 06-04-2017, 04:44 PM   #2
PAYNE1
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Hi! I'm so sorry for all your woes. I suggest you try to talk to another doctor.

Good luck with the gastric sleeve!

Let us know how everything is going, if you wish.
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Old 08-18-2017, 10:02 AM   #3
TERRY_20
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Join Date: Aug 2017
Location: Staffordshire_UK
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Hi Kell,

I've got MCDT mixed connective tissue disease, in other words to many overlapping autoimmune diseases and by what i've read of what your going through, it seems to me that you possibly have Lupus and also sjogren's syndrome also like myself.

Although your ANA came back clear after the first time should'nt count because most likely the steriod helped to correct that because Lupus is known for fluctuating the blood and giving off false readings, it being speckled the first time plus your symptoms shows enough for a possibility of Lupus.

Your ANA keeps being tested because the specialist knows that if it keeps showing negative after it being speckled that the blood should be retested every 6-9mths.

Terry
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