Lupus and the Brain?

[coralinn46]

Hi. I’m relatively new on here. Have had 3MRI SCANS, one being a DaTSCAN. Told I’ve vascular disease. Querying Parkinson’s but I’m not sure if they are confusing lupus and Parkinson’s since I’ve read many patients have been missed diagnosed & treated for Parkinson’s when they’ve had cerebral lupus. Appreciate any comments. Or advice since my consultant is unwilling to do further checks to see if I’ve vascular disease elsewhere & is adamant it is not in her area.

Thank you for your support and guidance.

[KayHimm]

I can imagine it is a worrisome time. These scans are not always definitely, I have learned that over the years.

Do you already have a diagnosis of lupus?

K

[coralinn46 in reply to KayHimm]

Yes about 35yrs ago at which time I was very ill. During my 30's-50's I've being keeping fairly well up to about 5yrs.

[KayHimm in reply to coralinn46]

It certainly is a good question for the neurologist. Carolinn. They can help you to understand the difference in the way these conditions look.

We will be rooting for you. Please check in and let us know how you are.

Xk

[Freckle1000]

Autonomic problems that seem - parkinsons like - can be related to lupus damage ( e.g. Damage to the peripheral nerves that connect to heart and vascular system). I have SLE Lupus and fortunately - don't have damage to my heart or vascular system - but they all act as if they are diseased due to the nerve damage.

But the only way to figure out wether any of this stuff applies to you is to be thoroughly checked out by a Lupus specialist.

[coralinn46 in reply to Freckle1000]

Thank you this is very helpful. I do have Autonomic neuropathy. I will need to find a good consultant both rheumatologist and neurologist that understands Lupus and the Autonomic system, cardiovascular system.

[nonny]

Hi Coralinn46,

I don’t often post on here but your post Is very similar to my own experience. About 6/7 years ago I had numerous mri’s and was showing symptoms of a fairly bad tremor, which I still have, and loss of memory and words for various things. Because my father had Parkinson’s they decided to do a Dat scan and I was told I very definitely didn’t have Parkinson’s but did have vascular disease.

I had been referred to a neurologist for all of this who has been wonderful and still continues to see me.

I had also been suffering from very bad headaches, vestibular migraine, classic migraine and an as yet unidentified type of headache and it was noted that the blood thinner I was on for APS actually affected these and the more thinner I used the less I got the headaches. Sadly in the end the Lupus clinic was very unhappy about the high risk of bleeding with higher doses of anticoagulant and I agreed to reduce back to a maintenance dose and the headaches have again increased.

My neurologist is very supportive and has helped considerably and I believe that the anticoagulant has helped to keep the effects of the vascular disease at bay although the poor memory, loss of words etc is definitely worse during the headaches. I’m not sure if any of this will be helpful but I hope you find some support.

[coralinn46 in reply to nonny]

Thank you for this very helpful information. There is no family history of parkinson in my family. I will need to try get a consultant that understands lupus and possibly vascular problems which I'm lead to believe I have anyway along with autonomic neuropathy.

[AimeeA]

Lupus is unfortunately the gift that keeps on giving in terms of other diseases that start to manifest themselves that are common in lupus patients due to the damage lupus does on all the different bodily systems. I have lupus plus Sjogren's plus Hashimoto's plus low thyroid plus low vitamin D, common conditions associated with lupus.

So it's not always a case of either/or with lupus (i.e., it's either lupus or something else), it is possible to have multiple other problems that are an outcome of having lupus and in addition to lupus. And sometimes it is very hard to distinguish whether lupus is the primary cause or something else is.

So vascular disease can be a side effect of lupus. And Parkinson's is caused by nerve damage, and lupus can cause nerve damage. So it is possible to have multiple diseases at once.

Often they do not know where that fine line is until they try to treat something and see if the treatment works or not. And you will accumulate various doctors with different specialty types because lupus can impact just about all systems in the body. So one doctor truly doesn't usually manage all when you have lupus, because their specialties are different.

So best to listen to the doctors and take the treatments to see if they help or not. And if your symptoms are still there and not being addressed, keep at the doctors to keep digging until they get to the bottom of it and find the right treatment for the particular problem, whether they call it lupus or anything else.