LUpus Patients Understanding and Support
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Lupus or mnd?

Hi I’ve never done anything like this before but I’m so desperately confused. I am being told I have mnd that somehow crosses with parkinisom. So a year ago o payed for my funeral etc. my Question is it doesn’t feel like mnd. Symptoms come and go. I’ve had a blood transfusion for anemia. My Ana has just shown positive for homogeneous and speckled. But it’s only at 1:80 and am told that doesn’t count. I have all the symptoms of lupus. Have the allergic to sun blistered rash since early 20’s. Was not a severe problem until late 30’s. When I also got hashimotoes and autoimmune angiodoema whilst pregnant. Then I started getting severe blister rashes. Prednisone is wonderful may I say. Lol. The Drs are saying because the rash can go on it’s own it’s not lupus. Is this correct. Also when I get the rash on my face it’s not on my nose. So does that mean it’s not lupus? My kidneys are effected off and on. My blood pressure plummets on standing and heart rate goes up to 160. I could fall asleep walking for weeks. My asthma is a nightmare. But prednisone cures most of it. Then I feel wonderful. Also I get fasciculations which is the reason I have a diagnosis of mnd. Has anyone here been misdiagnosed for mnd instead of lupus. I feel so desperately a lobe. Thanks so much if you’ve read my ever do boring whining. Terri

5 Replies
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Dear Terri,

You are neither boring nor whining and I am upset that this is how you feel the response will be. I wish I could give you a diagnosis, but I am not a doctor! I can understand how frightening your situation.

By fasciculations, do you mean muscle jerks, at rest? I certainly have these, when I am lying in bed, or sitting in a chair watching TV.

Who gave you a diagnosis of MND? Have you had a second opinion?

The fact you have a diagnosis of an autoimmune disease, makes me feel it make sense to see someone else because many people have more than one autoimmune disease.

Lupus is poorly understood by doctors so to say a lupus rash would not go by itself is incorrect. There are many different rashes in lupus: the "malar rash" is not common and only affects some 25% of people with SLE. There are many kinds of SLE and some patients with SLE don't even have a positive ANA. They are sero-negative!

If you feel this is not MND but lupus, you could ask to see a lupus specialist - not all rheumatologists are expert in lupus. If your GP refuses, could you afford to see someone privately at the London Bridge Lupus Clinic, London?

I would certainly explore the possibility of an alternative diagnosis.

If you need to talk further, please contact me. I will also send you some details privately.

With good wishes,

Ros

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Thank you so very much for your reply. I’m actually in Australia and just found this site.

The fasciculations were diagnosed with an emg. Yes I can see them. Only in legs though. I was told my spinal injuries could have caused the fasciculations though,

I really needed to know about the Malar Rash Di thank you from the bottom of my heart Roz x

Reply

The malar rash needs a biopsy to really determine it. It also must not cross the lines on either side of the nose, into the mouth area. There are many kinds of rashes involved in SLE, such as livedo reticularis, a lattice-like rash, or a V-shaped rash on the neck.

If you are in Australia, look up a lupus association that hopefully is near where you live and ask for a specialist.

This must be very frightening for you. You seem to be saying this is based only on the fasciculations? Benign fasciculation syndrome (BFS) is a neurological disorder characterized by fasciculation (twitching) of various voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, legs, and feet.

I do not know anything about MND that crosses with Parkinsons but perhaps you also need to see another neurologist?

How did this doctor explain kidney involvement etc? There are too many unexplained aspects, including your symptoms coming and going. If you don't mind my asking,have your "MND" symptoms deteriorated in the last year? Can you discuss this with your GP?

With good wishes,

Ros

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Hi thanks so much. No the weird part is I’m not weakening. My heart rate drops by 40 on standing. I have shocking asthma attacks that come and go. Prednisone helps this. The bblood results for the kidneys have been deteriorating the last 2 years. Although I keep getting uti’s. Or just have to go to bathroom frequently. Thanks so much for answering me. I am seeing another neurologist on the 30th. Pray for me please.

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I will and do let me know how you get on.

With good wishes,

Ros

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