am panicking big time!.....was diagnosed with borderline lupus 18 months ago but recently have been feeling so dizzy, fatigued and like Im drunk (but without having had a drink) as my balance is all over the place. I also get sharp pains in my arms and legs, aching,pins and needles and my bladder doesnt seem to be emptying fully. My bloods have been checked and have come back 'the best they've ever been ' showing no lupus activity, anaemia or inflammation so Dr thinks its unlikely that my new symptoms are lupus related. She said it could be MS so sent me for a brain MRI yesterday. I now have to wait 4 weeks for the results and am petrified. does anyone else have MS? is it even possible to have both or can it be that ive been misdiagnosed?
any thoughts would be much appreciated, thankyou.
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Belee
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Beelee...thought I had MS since I had muscle weakness after my daughter was born 14 yrs ago. This is where my entire health problems began. I also was terribly dizzy since 2007 and finally got an MRI done in 2008. Neurologist said nothing wrong. Everything looked good. I was so surprised because of the two big symptoms I had. Just tested borderline positive for lupus 4 months ago. Blood work always came up fine for all those years of testing. Strange how blood work shows nothing wrong, and then all of a sudden it changes. My problems started when I couldn't urinate and ending up in ER. I found I have scarred kidneys from constant UTIs from lupus. This is speculation from a kidney dr who is not a lupus specialist. Also, my dizziness has finally subsided from taking a digestive enzyme with all of my meals. I believe minerals were leaking out and I wasn't getting proper nutrition absorbed into my body. This is my theory. Don't have real evidence, other than I am not dizzy. I still get occasional brain fog , disorientation. Try to stay calm, breathe deeply and continue living your life. MRI will come and you will find answers. Take care...
thanks for your reply Natura. Am trying my best to remain positive! xxx
Hi I have all of those symptoms, except the bladder issues. The rheumatologist has always taken those symptoms as an indicator of lupus. I find sun exposure triggers them. Don't panic, it may be that you have a doctor who will not just associate new symptoms to lupus. He/she is taking an objective view of these new symptoms and wants to rule out other possibilities. Let us know how you get on x
Lupus can mimic the symptoms of MS so it's good your being tested to find out!. They are similar illnesses as they are both auto- immune ones. Best of Luck for the resultsX
What a worry for you. Hopefully all will be ok. Important to get things checked out. Has mennieres disease ever been considered..or vertigo? I have had mennieres for years and dizziness and falling over can be part of it, along with other things. My son has vertigo from time to time and often looks like he has a few too many when he has an episode. Good to rule everything out. Must be awful for you having to wait like this. Please let us know how you get on. Take care and hope today won't be too bad. x Lyn
yes they've checked my inner ear for any problems and that all came back clear. Its also not vertigo as I don't actually feel like anything is spinning I'm just very wobbly.
thankyou and will definitely post when I know more
Hi blee not sure if this helps regarding your bladder i had to have a small opp to widen things in that area as it found that inflamation due to lupus. They did a flow test to see if my bladder was fully empting, it was but the flow was almost non existent...i always felt i needed the loo it drove me nuts xx
thanks willowwag. But if it was inflammation due to the lupus, wouldn't that show up in my bloods? that's why im so confused!! if the symptoms are lupus related, why is my blood results so good?! such a confusing and complicated illness!!
It is possible to heave both, yes. But a sudden onset of new symptoms as you describe - that sounds unlikely to be MS. Check your vitamin D3 which has now been linked to MS-like symptoms if low. Secondly, your bladder problems could be down to lupus - try and read about interstitial cystitis.
Lastly, just because your blood tests are within range it doesn't mean that lupus isn't active, it only means that it hasn't reached sufficient mass to show in your blood tests. There are many causes for the set of symptoms you describe, so don't focus on MS, it could be a much simpler explanation.
Allegedly "Lupoid Sclerosis" exists : which is an overlap of Lupus and Multiple Sclerosis.
However cerebral microvascular ischaemia is a more likely explanation of MS-like symptoms in a person with lupus.
Two possible mechanisms are : antiphospolipid antibody syndrome, (aka Hughes Syndrome) , or alternatively cerebral vasculitis.
[ BTW microvascular disease usually does not show up on an MRI : it's usually below the limit of resolution , the vessels affected are thinner than a strand of hair ].
I used to get dizziness, with the fatigue and balance problems, and feeling like I was drunk, ALL the time. For years and years. I was constantly walked into things, misjudging distances, and would topple over even when I was standing still! And yes, I also used to get a weird sensation in my arms and hands, like a tingling, or a numbness - can't describe it. This was before I was diagnosed and I thought it was just a weird thing. Then a few summers ago, I was trying to desensitise myself to the sun (because I didn't realise I had lupus!), and all those things got SO much worse. But since I got the diagnosis, I stay away from the sun, and those symptoms are so much better, I'm not really troubled much with them any more, just now and then when I'm really fatigued.
very encouraging that I'm not the only one to feel like this but sorry to hear you've felt as rough as me!
I've been keeping out of the sun completely (except for the 10 min school run twice a day) and am lathering myself in 50 sunblock so not sure how else I can protect myself. My rheumy said 'the symptoms aren't lupus related' as my bloods were so good, which is why I was getting so anxious!.
will just have to sit tight and wait for my results now. will let you know, when I hear.
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