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TOPIC: Now Diagnosed

Now Diagnosed 2 years 8 months ago #3592

  • jonth
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I just would like to say a big thank you to Barbara this morning on the helpline. It was lovely to talk to someone, who listened to me, and asked me questions. I have been finally diagnosed after 15 years, after being told its in my head, or I am just depressed. Only thing is , I have been diagnosed with Functional Dystonia. But I have Chronic Pain head to foot, Massive Fatigue, plus Severe Balance and Co-ordination Problems, and I am having these attacks, where my speech goes slurry, or my speech goes altogether. Plus I have other health issues, I.e. Asthma, Epilepsy, Allergies, /Anaphylatic Shock, Osteoporosis of the spine and hips, plus just before my Dystonia, I had Breast Cancer, and I was at greater risk of Ovarian Cancer, in which I had a Oopherectomy, in which my Nerves were damaged, and I was diagnosed with Neuropathic Pain. I still feel that even though I have been diagnosed with Functional Dystonia, that I am not going to to be believed, but top Doctors have diagnosed me, and they believe me, my symptoms are real, and I am really suffering. Anyone else been diagnosed with Functional Dystonia, and by the way I have a Hemi-facial spasm in my face, and In-turning legs and feet. Thank you again Barbara for listening to me, this really helped me. Kind regards Jo
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Now Diagnosed 2 years 8 months ago #3594

  • Tweak the Welsh
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Noswaith dda,

I can't share anything useful - this is my first post here - but I saw no one had responded.

I have FMS (Fibromyalgia) and bouts of M.E - I suffer from persistent chronic fatigue and unexplainable pain and intermittent variable loss of ability to get about/function physically and mentally.

I have a lot of conditions which are all neurological barring the asthma. Dystonia (if I read it right) is also a neurological disorder. I learnt a long time ago that people with one neurodisorder are several times more likely to have others as well. Has your GP or specialist looked at possibilities like CFs/FMS/M.E? There's no cure but I spent a few years taking Gabapentin (tried Pregabalin but I just couldn't stop eating on it) and at xmas I changed to Amitriptylene at night instead and its ended up controlling some of the pain and fatigue better.
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Now Diagnosed 2 years 8 months ago #3595

  • jonth
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Hiya Noswaith dda, thank you so much for responding to me. Very kind of you. Sorry to hear of your health problems FMS and ME and all the pain you have. I am going to see my GP tomorrow, and ask if I can be referred to Fatigue /ME Clinic. Obviously now I have been diagnosed with Functional Dystonia or FND is the other name as well. I have been given a website to read, www.neurosymptoms.org, which is very helpful to read. There is a lot to take in. My symptoms have just got worse and worse, the last 4 years I have deteriorated fast, the Fatigue started 4 years ago, unfortunately Drs just kept saying I was just depressed. But I haven't got depression, I have loads of symptoms.I have about 100 allergies, so cannot take a lot of the prescribed drugs, so cannot take Gabapentin. Obviously I have Neuropathic pain in abdomen, I.e. Nerve damage, and then Neurological symptoms started up, and then just got worse and worse as time went on. I have a Fentanyl Patch that I place on my skin, helps a lot now, as I asked my GP to up the dosage. I have Amitriptyline, but I can't cope with that much of the drug. I am also on Baclefen, only been on it for a while. I also have Botox injections around my right eye, and just started injections around my mouth. If you have Functional Dystonia, the main thing with this is Fatigue. Everyone can see I am really fatigued.even when I rest up, I am so tired and exhausted. All I have been advised to do is , lay on bed 4 times a day for 20 minutes. I have always paced myself. stay in contact, thank you for responding to me, very kind of you, best wishes Jo
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