Neurologist this evening... diagnosis? Migraine.
I KNOW I HAVE MIGRAINES!!!!!
Seemed very interested in my tingly/ numb feet but not my hands nor anything bloody else.
Apparently all my pain is due to my brain learning to identify pain more, that’s why I have stabbing pains and aches.
In his opinion I have no Lupus symptoms.
I’m at a loss.
Sorry for whinging
Hi , I reported to my rhematologist last month that for the past 3 months I've had constant pain in my ankles and heals with pain in bed at night like someone is sticking needles in the side of my feet , he asked if I had tingling and cramp and I said yes . He said he didn't think it was lupus pain he thinks it's neuropathic pain and suggested a couple of drugs including amytripiline , he said not all pains in joints can be blamed on lupus .
I agree but it was the sweeping comments to diagnose that he was making.
Need small nerve testing now. Feet are one thing. Migraines another. I don’t like how they focus on sorting one thing out at a time but don’t look at any underlying cause.
So my current diagnosis is migraine, peripheral neuropathy, neuropathic pain and suspected Chronic Fatigue Syndrome, this still does take into account all my other symptoms. My symptoms are the same as my sister’s who is diagnosed but because I am ANA neg they won’t consider it.
Just frustrated.
When I was in a slightly similar situation (although I had initially been diagnosed with RA) I focussed on Sjögren’s rather than Lupus.
Perhaps it is because you keep focusing on Lupus and this is rarely ANA negative? Whereas 30-40% of Sjögren’s sufferers are seronegative. Quite a large proportion of seronegative sufferers present first with small fibre neuropathy. And quite a large proportion of neurologists haven’t a clue about Sjögren’s!
practicalneurology.com/2017...
As always Twitch you are knowledge is invaluable. Not sure I have the dry mouth and eyes though I am always thirsty. Deffo not diabetic.
My sister was negative for years.
Thanks
Morning sweetie I am no doctor but if you have migraines for a long time I know that people have Botox injections for them and they really help. Try and google it and see what you think. It’s only a suggestion sweetie.
You can rant anytime you need to on here sweetie it much better to let it all out. Take good care of yourself hun. Love and hugs 🤗🤗🌹🌹😘😘
I need Botox for the extra worry lines anyway!!! 😂😂😂
Thanks for your lovely message.
This is a great place to rant. X
My experience (and many others) of neurologists is that unless you find one who understands connective tissue diseases they will tell you it’s migraine, functional, pain tolerance etc. I read somewhere that for every 100 people a neurologist sees, 25 will have migraine and 25 something unidentifiable which they often characterise as functional/ wonky pain receptors so a neurologist’s easy diagnosis is often one of these (especially if like you say you have migraine anyway!)
I was really ill last year, had a definite diagnosis of lupus about 8 years ago, saw a neurologist who then undisgnosed the lupus (as my ANA was now negative and dsDNA has always been negative) and said it was migraine, functional and fatigue and wasn’t CNS lupus and the best treatment was reassurance 🙄 We then found out I was seriously ill with neuropsychiatric lupus (horrible name but just the current term for lupus in your brain and nervous system). My rheumatologist wrote to the neurologist to correct him saying that blood tests are often not relevant and to look at the patient rather than rely on inaccurate dsDNA and ANA tests. Lots of letters exchanged and other opinions (who all said NPSLE) including finally his neurology colleague. I got a sort of apology but I’m afraid it happens so often when they just don’t understand the disease. It is hard for them as they have so many diseases to understand and ours is particularly difficult - especially those of us with non typical bloods.
By the way recent research is showing a negative ANA is more common than previously thought. Historical studies tend to quote 5% are ANA -ve but more recent studies suggest it’s a higher % and there are reasons for it:
Sometimes people aren’t ANA positive at the start of the disease and become positive later
Some people lose their ANA positivity over time
Various drugs especially steroids, immunosuppressants etc can cause ANA to be negative
If you have a primary (born with but many people don’t know) immunodeficiency disease your body struggles to produce antibodies so more likely to be ANA -ve.
Have you had your total complement levels tested? That’s how I eventually found out I had a primary immunodeficiency disease and why my blood tests are not typical of lupus.
Do you have a good rheumatologist? It’s worth seeking the opinion of another neurologist (but check carefully they know about lupus first!)
X
Wow! Thank you for taking time to give such a detailed reply, it’s really appreciated. What you are talking about rings true for me and my sister. Rheumatologist was a ‘joint’ specialist according to the ‘migraine’ neurologist. Rheumy was deffo a numbers man, as is neurologist.
All we can do in these situations is to keep trying.
I know in my heart of hearts something isn’t right. As soon as nectvseybof tests are back I will be going for a full review via a health provider scheme my employer has. It’s only done on your records but someone eagle eyed may put two and two together.
I’ll give neuro a second chance and then look for second opinion he’s at Salford where they do have a Lupus centre so should’ve be hard to get the link there.
And ... I’ll follow up on that test you mentioned.
Thank you so much x
Have a good weelend
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