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Strange Symptoms

Postby LIttleWren on Wed Aug 14, 2013 11:28 am

My ME was fairly classic, I had Glandular Fever when I was younger and my health was never quite the same again, then when I was 22 (I'm now 38) I got a really bad dose of Influenza B with the symptoms never going away. It was initially diagnosed as CFS and then eventually changed to ME.

Most of the symptoms were standard, joint and muscle pain and fatigue, poor memory, poor concentration, poor sleep quality and a lot of sudden allergy/intolerances, but a few of the symptoms I'm told are not standard, numbness and loss of feeling in various limbs and joints, limbs not being where my brain is telling me they are and strange muscle spasms.

After a few years I was sent to see a rheumatologist who was surprised at the lack of physical indicators in my muscles and joints (I had above average flexibility). It's always been that my limbs and joints can move, it's just that I can't move them myself. The rheumatologist suggested that I should be checked by a neurologist and have scans done to see if there was a problem with the signals going to and from the brain.

Since then I've developed other symptoms that don't fit the standard ME pattern, partial paralysis of all limbs and joints when I wake almost every morning lasting anything from 20 minutes to up to 8 hours on occasion, although the average is 1-2 hours each morning. During this time I can only move my eyeballs (and breathe) before I slowly get regain control of each body part a little at a time. This has been going on for I'd estimate about 5-6 years.

About 2 years ago I also found that during these periods of paralysis it was starting to affect my throat so I was unable to swallow and was having significant difficulty breathing. Fortunately this happens much less often (once or twice a month at most) and is usually following a period of over doing it (trips to doctors, hospital etc). The feeling sounds like documentation regarding Sleep Paralysis, except I have no hallucinations (and can't open my eye lids) and I am fully concious throughout.

I also (around 10 years ago) found that every autumn when the weather starts to change (October/November) I have a period of several weeks where my limbs give out under me causing regular falls, usually on stairs. The fall triggers the same type of paralysis in my limbs that I have in the mornings and I have to wait anything from 5 minutes to half an hour for control of my limbs before I am able to get up. This happens several times a day during this time, but after 3-4 weeks it stops. It has happened during the change in weather in the spring but only twice in the past 10 years.

My GP is at a bit of a loss. They have performed a neurology pre-assessment a couple of times, but everything appears normal so they are unable/unwilling to refer me and unsure which area of the field they would refer me to anyway. I'm told that they would need to assess me during the paralysis, but as they don't do house calls in the mornings and I can't know how long it will last in advance, that is never going to happen.

I'm wondering if you have any ideas what the causes of these symptoms could be, is it ME or could the diagnosis be inaccurate in some way and what if anything I can either do about it or do to get a referral to neurology for scans to find out what is going on?

I did see a neurologist privately a couple of years ago, but again he did the pre-assessment, which was inconclusive so didn't see any need for further tests.

Edit

I forgot to mention, I don't take any medications since there's no treatment, pain killers don't help the ME pain at all and the GP did try me on amitriptyline (for it's pain suppressing properties). It didn't do anything in the two days I took it before I developed a severe allergic reaction and had to stop. I've had various blood tests taken over the years and they have always come back perfectly healthy. Other than the ME I am in excellent health apparently, the healthiest sick person anyone has seen.
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Re: Strange Symptoms

Postby karenlr22 on Wed Aug 14, 2013 1:08 pm

Paralysis isn't a strange symptom of ME as Greg Crowhurst has recently been writing about it on the Stonebird website in relation to his wife, Linda, who has severe ME. I'd take a look as others with severe ME also suffer from paralysis and I believe it's a symptom of ME. Of course, your doctor isn't going to be able to help you as the medical establishment have little understanding and knowledge of ME and how it affects sufferers. Misdiagnosis of ME is rife. I hope you find the help you need.

Karen
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Re: Strange Symptoms

Postby louise hay on Wed Aug 14, 2013 8:42 pm

thankyou littlewren for bringing this topic up , & Karen lr22 for the info on stonebird website I hadn't come across this site before,
ive experienced similar over the years,, sleep paralysis / disorder where Im in bed & have awoke & am conscious but cant move ,,open eyes or speak for minutes,, very scary. and also rightsided numbness weakness in face arm side leg & foot,,
my diagnosis are m.e & joint hypermobility syndrome
sorry not much help but just so you know ur not alone ! hope a dr replies with more info .
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Re: Strange Symptoms

Postby Valentijn on Fri Aug 16, 2013 3:26 pm

Weird, I had the right-sided numbness too, a few years before I go sick. Eventually everything was ruled out, and a neurologist suggested folate supplementation which made it go away shortly after. The episode lasted 3 weeks, and was labeled as a complicated right-sided hemiplegic migraine, basically due to ruling out everything else.
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Re: Strange Symptoms

Postby Dr Alastair Miller on Fri Aug 16, 2013 3:56 pm

There is no doubt that in addition to the cardinal features of ME/CFS such as fatigue, brain fog, payback, muscle & joint aches, swollen glands and flu-like symptoms, many other unexplained symptoms are associated with ME/CFS. the important thing is to have any new symptom assessed on its own merits and not just attributed to - "of, of course. it's due to the ME". GPs can do this assessment effcetivley and if they are in any diagnostic doubt they should refer either to their local CFS/ME clinic or to another appropriate specialsit (neurology, endocrinology etc).
Dr Alastair Miller
MA FRCP FRCP (Edin) DTM&H AHEA
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Re: Strange Symptoms

Postby LIttleWren on Fri Aug 16, 2013 9:53 pm

Thank you for the replies, it's nice ( :? ) to know that it's not just me with these symptoms. The stonebird website looks particularly interesting I'll be looking at that more over the next few weeks.

Dr Alastair Miller wrote:GPs can do this assessment effcetivley and if they are in any diagnostic doubt they should refer either to their local CFS/ME clinic or to another appropriate specialsit (neurology, endocrinology etc).


That's the problem I'm having, my GP has done blood tests that show I'm fit and healthy and have performed the neurology pre-assessment then tell me that it doesn't show anything so they have no idea where to refer me. I was hoping one of the medical team might have some suggestions how to go about getting a referral for MRI/cat scan tests to see what if anything is happening on the neurology front.

I do find it strange that the condition is catagorized as neurological with the DWP and I believe has been for a number of years, and generally has a lot of neurological symptoms, and yet none of my GP's nor any of the other specialists (immunology and rheumatology) are able to refer me to neurology for examination.or testing. I'm in the North East, so we have quite good medical support for ME in the local hospitals.
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