HELP !!!

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I was referred to a neurologist in August, as I have been getting tingling in feet and hands and sometimes face. He has referred me for further tests, blood, MRI, nerve conduction and sleep studies. I have had a positive abs test 1:320 and I get sores in the roof of my mouth, my body hurts, my fringe looks like I have cut it, and is dry and brittle, and sometimes it hurts just to get out of bed, I sleep terribly. I feel like a hypochondriac, I have blood showing in my urine ( with no infection). I also am suffering tiredness beyond belief. My neurologist thinks it maybe fibromyalgia, however my sister has lupus. Please help

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  • Posted

    Hi, Luisa,

    Do you know any of the other blood test results? Lupus criteria includes low Lymphocyte/Leucocyte count often with raised ESR and CRP. As I understand it (from looking into autoimmune diseases, (I, too am awaiting appointments!)) Fibromyalgia does not cause deranged blood results, i.e no inflammatory changes or ANAs, the main symptoms are tiredness and pain. Also, the research suggests that family members of Lupus sufferers are more likely to get an autoimmune condition.

    Speak to you GP about the difficulties sleeping, luckily I didn't need to as mine suggested a low dose of Amitriptyline right from the outset, it has helped enormously, I now sleep deeper and get back to sleep quicker if disturbed.

    Good luck.

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    • Posted

      Hi Susan 

      Thankyou for replying. The ANA blood test is the only specific one take so far, no other specialist bloods have been taken yet. The neurologist isn't planning on seeing me until all the results are in, and the blood test results got sent to my dr, not the specialist. My dr has written to the neurologist explaining the blood test results and asking if I should be referred to a rheumatologist, but as yet has had no reply.

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    • Posted

      Rather like Jean (who has also replied), I've had all sorts of weird and not so wonderful symptoms for the last 8/9 years. If I had not been looking into my brother's health issues (long story, but his symptoms suggest something in the autoimmune bracket too), I would never have considered that I was unwell, I just put everything down to the result of a fall which injured my neck and shoulders (amongst other bits!!) and of course my age - menopausal etc! - Only after reading into Lupus and so on did I get that 'Lightbulb' moment. My GP listened and agreed that somethign was amiss and referred me to a Rheumatologist straightaway.

      I have positive ANA 1:320, raised CRP & ESR, low Lymphocytes (or Leucocytes if you prefer), low Vitamin D, joint pain in most of my small joints and my knees, muscle pain and inflammation, dizziness, a rash which comes and goes, odd lumps in my mouth (not sure if they're ulcers though), frequent sinus infections, killer headaches (Migraine and Cluster), confusion/forgetfulness, crap spelling and handwriting when feeling really awful, Reynauds and very sore/dry eyes. Any one or more of these in a variety of interesting combinations affect me at any given time, it's always a case of 'what new and interesting symptom this time?!' Oh and did I mention my feet - they are so painful sometimes I can hardly walk. I also lose handfuls of hair now and then.

      Because everything just crept up on me and I'd had the fall and was of menopausal age with hot flushes and period changes I didn't think it could be Lupus etc. Hopefully you will get a referral to Rheumatology as Neurologists tend not to deal with Lupus etc. They will be able to rule out certain conditions though, such as M.S, Pernicious anaemia etc. It might be worth asking for folate levels and Vitamin B levels to be checked.

      All the best.

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  • Posted

    Hi Luisa

    Your symptoms, with the exception of the blood in urine, are remarkably like mine. I have been ill for seven years and was only diagnosed earlier this year. I have MCTD (Mixed Connective Tisssue Disease). which includes Pernicious Anaemia (tingling in fingers and toes!) Underactive Thyroid Gland, SLE and Fybromialgia. Previous to being diagnosed and receiving medication I had so many ulcers in my mouth I couldn't speak or eat.I have issues with headaches and my sleep pattern is non existent. I have joint ache constantly. Since a meeting with a Rheumatologist I have been taking Hydrochloroquine. They don't know why this helps with Lupus, but it does, My energy levels have increased a little and I don't have anything like the number of sores in my mouth. If your sister has SLE there has to be a good possibility that you have. You have to stick to your guns and explain in detail how you feel. It is has me seven long years of explaining to medical staff who do not know what to make of mixed symptoms.Make notes before you go to see him again so that you don't forget anything - another thing that affects you!!

    Don't give up hope, but make sure you make them understand how you feel. I wish you luck!! XX

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    • Posted

      Hi Jean

      Thankyou for replying. I am as we speak off work, I did some exercise last Saturday, which I would have expected to ache from a little, but by Saturday evening I was in so much pain and so tired it was unbelievable, I had to spend Sunday, Monday and Tuesday in bed, my whole body hurts, fingers toes wrists, and I still have very little energy. Went to my go and he said I have flu!! Sound awful but I don't think it is flu, I used to be so fit and healthy and now can't over exert myself because it makes me bed ridden. I feel awful, but it's hard to explain to people that don't understand, I feel at the end of my tether.

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  • Posted

    You are definately in the arena of people who understand you!!!! Symptoms can varied from one person to another...although the tiredness and pain is always in the description of symptoms. I spent 25 years doing keep fit, swimming etc, but now cannot even go for long walks without experiencing pain and am always always tired. But I notice Susan replied and made a point about sleep. I have just started taking Amitriptyline - only a small dose in the evening - this was given to me for back pain - however it is like a magic pill - I get into the land of nod and sleep in excess of 3 hours in one go!!!!!! Not experienced that for a long time!! Don't think you are a hypochondriac - you are currently a person who has health problems which have not been diagnosed.

    Good restorative sleep is a must with these conditions - it repairs our bodies. You must listen to your body and how you feel and rest when you need to. I work full time, have a family and run a house, I am single and sometimes I am utterly exhausted......but I am important and I rest when I need to......nothing is that urgent it cannot wait. Just because you have something that nobody else can see does not make it any less important. Take care of yourself!!! XX

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    • Posted

      Hi, Jean (and Luisa),

      Sleep is sooooo important. I've been insomniac for decades (very active mind and cannot switch it off) but since health problems it has become worse - I was barely getting by on 2-3 hours a time - until the Amitriptyline. I can actually sleep for 4 or even 5 hours in one go, assuming the cat or husband or son don't disturb me!

      I go swimming once a week which has helped with muscle strength and as it is low impact it does not strain or hurt my joints. I work night shifts part-time and tend to do very little in the pm before going to work so that I am rested before work. My advice to anyone in similar situations is, as you say, Jean, listen to your body - It hurts for a reason and until the reason is identified and treated don't exert yourself and risk making things even more unendurable.

      Hugs all round and feel better soon.

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    • Posted

      Hi Susan

      I work full time, and my job is quite hectic, I try to rest as much as possible, as soon as I lie down, I'm gone!! But only for short periods. I have always been quite athletic and it just kills me to know I can't do it anymore. I agree with little and often and will be taking things slowly until I get a proper diagnosis, and medication. Thankyou for everybody's help, nice to know I'm not alone x

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