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Undiagnosed Illness - Is there anyone out there that can help my poor lovely Mum?

Posted , 6 users are following.

sarah571
sarah571

About 2 years ago my fit (good walker), young looking 77 year old Mum said she didn’t feel quite right!

After a couple of months thinking this feeling would go naturally she started to get double vision so she went to her doctor who referred her to the local neurologist who curtly dismissed her as suffering from stress.

Following this a whole list of symptoms she had never had before along with double vision (one eye actually sticks in place whilst the other moves normally until it then corrects itself) occurred; muscle loss, oral thrush, hair loss, scaly scalp, rash over bridge of nose/cheeks, eyes extra sensitive to light, red glows on her elbow joints, significant vein mottling on knees and backs of elbow/arms, joint stiffness particularly neck/shoulders, swelling of ankle joints, bloated stomach, but most of all chronic fatigue/weakness (which at the start was 2/3 days a week, now every time she expels energy over even the smallest of tasks it is now exhausting for her. When she feels very weak her fingers and toes tingle and finger tips turn red. She has had no significant weight loss but says to pass a motion she now almost has to instruct her bowl to work rather than natural function. She also says she generally feels worse after eating but his may be due to energy used before hand to prepare meals.

Since this all started she has had more blood tests than I can count – all negative.

She was then referred to the elderly patient specialist who to be fair sent her for brain CT scan (possible scaring but normal for age) CT scan abdomen (clear), echocardiogram and 24 hr heart monitor (thickening of heart muscle may be minor valve leak, angina but did not seem overly concerned – her doctor thought this was a red herring as blood pressure has remained pretty constantly OK.

However over these two years she has been told she may have thyroid trouble/low cortisol, fibromyalgia, polymyalgia, heart issues, lymphoma, parkinsonism, all of which do not appear to be the case (for which she has had a whole variety of pills thrust at her for short periods without positive response).

Parkinsons does run in her family and her doctor now says he wants to trial her on Parkinsons drugs but at the same time says her symptoms don’t appear to be like Parkinsons! In fact despite all the tests and symptoms he still doesn’t know what it is.

I am convinced she has an autoimmune condition like Sjorgens syndrome,lupus ,Raynards or similar which we have suggested to her doctor/specialist but they appear to go on blood test results alone which from my extensive research does not always prove a person with a negative blood test result does not have the illness.

She is currently not being treated because no one can give her a proper diagnosis and consequently she is getting very weak.

PLEASE CAN ANYONE HELP?

0 likes, 6 replies

6 Replies

  • lily65668
    lily65668

    Posted

    Your Mum's condition doesn't sound like Sjogren's syndrome to me. I'm a trained nurse and also an SS sufferer - though it took 10 years to get a diagnosis and even I didn't know what it was! Your description of the "butterfly rash" on her face does, however, sound a bit like lupus. I agree - it's difficult to get a diagnosis of this one, especially in an elderly person.

    This is a long shot - and I emphasise I'm not speaking from my own clinical experience here, it's purely anecdotal. 20 years ago a friend of mine was seriously ill for nearly a year, and even spent several weeks in hospital. She eventually got a provisional diagnosis of lupus but it didn't really seem to fit. Then an inspired doctor did a blood test for Lyme disease and got a positive! After that she was treated with specialised antibiotics and rapidly recovered.

    The only reason this came to mind is that you said your Mum was a good walker. My friend was too, and often walked in the country or in parks, where she would have been exposed to bites from the tick that causes Lyme disease.

  • sarah571
    sarah571

    Posted

    Thank you so much for your comments which are very much appreciated. We will make some enquiries to get Mum tested for Lyme disease. Since writing in September still no answer to what she has got despite further hospital visits and tests. If it turns out to be Lyme disease we will let you know. Whilst writing we are sorry to hear you are a SS sufferer - we hope the treatment you have for this is working well. With best wishes & thanks again.
  • margaret22116
    margaret22116 sarah571

    Posted

    Hi I wonder if you ever got a diagnosis for your mum. It does definitely sound like Lupus to me. Vasculitis UK are a great support group and worth contacting.
  • NanaStacy
    NanaStacy sarah571

    Posted

    Did she ever get a diagnosis? I am very interested due to I am 53 and having same symptoms. Have been tested for Lyme twice...neg. Excruciating pain, stinging, bone crushing pain in hands/ wrists, especially at night. Long list goes on...

    Nana Stacy

  • phyllis75890
    phyllis75890 sarah571

    Posted

    I am a 69 year old retired nurse and I have most of the symptoms the same as your mother.  All of my tests were negative except for one that was boarder line, but my symptoms were so bad mum rheumatologist felt I had Sjögren's and immediately put me on Plaquenil and a gluten free diet.  It took a few weeks but what a difference.  I don't have double vision, but the usual dry eyes, losing my hair, dry scalp and all the rest of it.....etc, etc.   I thought the redness on my cheeks  might also be lupus, but the doc said it just part of photo sensitivity.  I live in Florida and when it's summer the sun hurts my skin, even if I'm just walking to my car and I must stay covered.  That's another thing she told me, put on sun block every morning, but I prefer to just cover up. My doctor said Sjögren's won't always show up on the tests, but due to my symptoms and that one test that was boarderline that she felt comfortable giving me that diagnosis at that time and got me started on medication. Ihopeyou can soon find a dr that will get you started on plaqinel.  Best of luck! It can be really tough.

  • Nu2this
    Nu2this sarah571

    Posted

    Hi Sarah,

    I feel for you and your mom. I'm also there at this point. I get tingles in my arms and fingers, I'm exhausted just sweeping the floor. It sure sounds autoimmune to me. I tested negative for all autoimmune disease but had a positive result for connective tissue disorder which is a marker for autoimmune disorder. I was put on placqunil will no real diagnosis. I went to a different Rheumotologist and he told me just by opening my mouth that I had Sjogren. I do have the symptoms for it although negative ANA. Dont give up. You know your mom and she knows her body. Some doctors want to blow you off as crazy or super sensitive. I had one tell me that and he made me feel terrible. Don't give up on your mom....she's right.

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