Myalgic Encephalomyelitis Community
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Is it ME?

Hi there, sorry for this long message but I am hoping for some advice or help!

some background to me: I am a 23 year old female with health issues for many, many years (predominantly since I was 6). At the age of six I was kept in isolation in hospital with a virus that we don't know the name of. From this illness I suffered convulsions, vomiting, very high temperature etc etc. Since then I have been sick, I had shingles at 10 and was diagnosed with Tourette's Syndrome at 17 (very late diagnosis). Along with all of this I have had reoccurring issues with temperature control, stomach problems, temperatures, nausea and painful skin to the touch. I missed a lot of school as a child due to these issues along with a period of bad migraines (they have now been treated and aren't an issue).

More recently (the last 8 months) I have become the most ill I have ever felt. This 'period' of illness became it's most prevalent after a hip operation. Prior to this all the aforementioned symptoms were nearly constantly there, however now it is on a level that I have never experienced before. I am tired all the time, regardless of how much I rest or sleep, I have very sore and stiff joints that primarily affect my arms but on and off my hips and knees too. My muscles get very sore and tired after doing even the smallest things and I on bad days struggle to eat and lift a glass up without pain and feeling the brunt of it for hours after. I have lost 14Kg in these 8 months, I am nauseous nearly constantly, have bowl issues frequently. I get ocular disturbances, including 'light' flashing around and also fuzzy vision, a lot of the time I get very dizzy accompanied by eyes blacking out and numbness down my arms. I get bad numbness and pins and needles in all limbs, back and neck pain, as well as a weird sensation of 'pricking' or 'stabbing' pain moving around my body that often makes me yelp slightly. I have myoclonic jerks which are separate from my (controlled) Tourette's, along with my leg giving way and also buckling often. I am very sensitive to hot and cold and am sweating nearly constantly (aside from this horrible heat outside) with night sweats. I also have very sore skin to touch, that also moves around and effects different areas at different times. I am finding it hard to hold pens at time (as someone who loves drawing this is a real issue), I am also finding myself losing my short term memory, stuttering, struggling to find words.

Due to all this I have had to defer my final year of university as I was unable to work or attend anymore, I barely have a social life as I often find myself feeling too ill to do anything or too tired, when I do I spend days and days after in bed in so much pain.

I have had every test under the sun including Lymes, Lupus, MS etc. All came back negative except for high levels of Glandular fever immoglubin in my blood. I have basically forced my GP to send me to neurology as she just said that 'hopefully it will get better'... it's not. Apparently to her I have no symptoms of ME. Does anyone have ay advice on where to go or what to do from here? I am so sick of it all!

Thank you and sorry for the long message,

Jess

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I feel for you. Trying to work our way through the maze is awful isn't it? And we are the ill ones wanting someone to understand. I don't have much advice other than to document everything and to keep telling your GP about your symptoms and there effect on your life. How is your cognitive function? I would recommend some reading but it can be taxing so if you are struggling then can someone study for you?

Your symptoms are neuro based and extensive so do you know if you have lived or worked in a water damaged building? The problems of mould mycotoxins can be extensive so try Paradigm Change website and avoiding mould info. This is a fairly new area and there are a lot of opinions out there so you need to be somewhat robust to cope with this info. Also drmyhill.co.uk/wiki/Mould_S...

I would also suggest that you check out Lyme UK for information as the NHS tests can give false negatives and treatment of the issue here is very hit and miss. Many people are told that they don't have Lyme only to have chronic health problems that they confirm as chronic Lyme themselves.

I wouldn't wish a diagnosis of ME, Lyme or mould on my worst enemy so this is not a nice area to research. But maybe some of the sites will resonate with you and your symptoms and you will certainly find FB groups to discuss the issue with. I was CFS/ME diagnosed that was actually untreated B12 deficiency, bad gut bacteria that NHS refused to test for, poorly diagnosed and treated hypothyroid autoimmune disease, and mould, with Lyme a possibility as yet confirmed. These realisations have taken quite a time to research but I am now much better. I wish you well.

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Hi Jess

Have you been to see the neurologist yet? Hopefully they will be able to see things afresh. The fact that you have high levels of glandular fever markers is an indication that you have developed ME. Unfortunately a number of people go on to develop ME from having glandular fever (my daughter for one). Your doctor doesn't seem to understand ME at all. There are some good information leaflets on the Action for ME website and there's what's called the purple book available from the ME Association website. This would give you an idea of how your symptoms fit within an ME diagnosis and also give you something solid to discuss with your GP.

At the moment there is no treatment for ME you have to find a way of managing it and living with it which does get very frustrating but there are communities of us who can support you.

All the best x

1 like
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Hi Jess

I see you have been searching through several HU forums for help for the last 9 months.

Hopefully the Neurologist will be able to help you. It must be so tiring and demoralising hoping to finally get a diagnosis, especially when you are feeling so ill.

I cannot diagnose you as I am not a doctor. If you want to look further into M.E. I would suggest the websites of Action for ME and the ME Society. I believe both have good information on symtoms etc and useful leaflets and booklets you can order.

Good luck and I hope you get a diagnosis soon.

Lottie

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You say you have had every test under the sun but have you had your thyroid checked as well as vitamins and mineral levels, such as D, B12, folate, ferritin?

Karen

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unfortunately many of your symptoms are classic M.E I would suggest seeing a different g p .

and checking out the phoenix rising website for some very helpful info. unfortunately getting the proper diagnosis is very difficult within the n h s who seem not to care about any complex ie expensive to treat/ research conditions.

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