M.E is a neurological disorder. It’s definatly real and not psychological, hence why the NICE guidlines are being reviewed. I just think when they don’t know enough about a condition the brush it off and the people who are going through it are made to feel like sh1t, then they say its M.E. Let’s see how things roll out over the next couple of years. There needs to be more money for research. Also alot of people get diagnosed with M.E to later be diagnosed with something else. Lina
Part of the problem is the medics paint themselves into a corner and then can’t get out even when it’s sometimes obvious they’ve got it wrong. We have these m.s. classifications - ppms spms rrms - yet when we study them they’re far from accurate. So am not surprised about this confusion re ME/MS
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Hi, youve had about as much fun as I have...seen 17 neuros...whats your claim? Ever been invited to their staff Christmas debacle? No, me neither!
I am in the UK. I may go private the NHS take a long time!
My appointment is 3rd March. All results are in…had a letter yesterday…all test results are in and negative for all except Spinal MS. I was worried about NMO/Devic`s. and breathe!
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Hi deb i know i read years back now about a research sure it was being done in netherlands could be wrong about that, but after it was classified as neurological it would thought it could be a benign form of MS, but with no demylinating lesions, as the symptoms were simply way too similar. x
Hi crazy Chick. I have looked at benign ms and is it the name given to ms if a person with ms has had no symptoms for several years.
This is what had me thinking. It appears that alot of people first diagnosed with M.E then went on to a diagnoses of PPMS.
It might be that drs can’t be bothered to do the tests for ms and so they fob us off saying we have me!
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I firmly agree with all of the above, although I couldn’t even get a diagnosis of ME. I’ve had consistent symptoms for 40 years, but no lesions showed up until sometime within the last 4 years, so all of my tests for everything were classified as negative. They need to stop focusing so much on lesions and look at the bigger picture.
Had they tested me the “old” way when it all began (dunking me in a vat of hot water), I would have had a diagnosis instantly, which might have enabled me to get some use out of the DMT’s once they were created.
Hi Noramum, I feel somewhat peeved too that my lesions didn’t get seen until last month and if tests had been positive over 20 years ago, I could have had DMT and maybe not ended up in a wheelchair so soon. But these thoughts are not going to do me any good whatsoever…so I MUST stop having them.
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I understand what you are saying. I find that I am asking myself the same question I just don’t understand that over 13 years there has been episodes. I was ok for about a year bladder stopped working, then speech affected for a day, then all symptoms at once. I was not far off from completing my midwifery degree and doing 3-4 12 and half hour shifts per week,juggling uni,home and 4 children to not being able to do anything now 13 months wheelchair bound. All symptoms have stayed and new ones have come. I just don’t understand why everything has progressed to aggressively and they found many brain lesions and spine lesions. My gps are fuming. I just think that when they don’t know they fob you off. I hate not being able to do things, Inhate the constant pains,fatigue and sapms (and the rest). When you ask questions they ask how your mood is! Lina
Forgive me if youve already said and Ive forgotten, but did they find oligoclonal bands in your LP? Where are you?
I had an LP at one hospital and I do not know the results ( emergency admission where an anyresum was found). I am getting seen at another hospital(my main hospital for past 20 years) who I am under their neurology,ophthalmology and urology, that hospital have ordered their own LP which I am awaiting an appointment for. Unless the hospitals are the same trust they do not have the same notes. I am in London. I am under Guy’s and St Thomas’ Hospital. I am in the process of being transferred to St George’s in Tooting. But I hear King’s college Hospital are brilliant. My gp just called and made an appointment for my EMG results. More worries and waiting. Lina
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Rosie! This is shocking. I am hearing this far to often. I hope you get answers to what’s really going on. Taking decades, which is extremely frustrating. All the best Lina
I understand how you feel Lina. what was against me was my AGE.
I believe there is no pain in M.E. its actually edocrine, and more heart issues, where the body cant recover from exercise. i think its another disease that has morphed into something else and also fibromyalgia. My daughter has M.E. it started with her crashing she couldnt get out of bed really for 2 years, to just go to the toilet would exhaust her. slowly with therepy we got her walking, and now she is in recovery and remission BUT her illness is morphed and she has pain and has trouble walking so what do they tell her she has FIBROMYALGIA.
she has her own business and works hard.
her MRI did show possible demylinating lesions, but they now think after an assault by a school girl when she was in secondary who pushed her against a locker hard she has a form of brain damage.
I dont think she has MS. no way could i scrub a huge barn even 10 years ago.
what i want to know which worries me a lot lately is why are so many people sick, especially young women? I know more sick then well now.
when i was young (no its not a cliche lol), no one was ill.
Now jeez everyone seems to be ill.
Is it an environment thing? are people imbibing something or breathing in something which is making them sick?
I just dont get it or is it some form of hysteria called the internet? I am honestly not saying anyone on here but in my circle as they have symptoms but not like you are I.
something is not right.
My father years ago had a petrol station, and one day at lunch he said we have a new petrol now GREEN PETROL, and reading the COHSS, he was worried said it was foul stuff for the body and could be carcogenic. He stopped his staff from serving from that day. Maybe he was right as the common denominator could be something as simple as fumes from petrol? in some countries they have filters to stop it coming back. Britain is awash with sickness. Our NHS is overloaded with sick people why? its not all down to people using our system, as some of the immigrants I know especially the women live low key lives and dont drive.
something is amiss. I know i sound like a nut job ha ha, probably I am but look to the left and look to the right of you and see how many are sick around you?
Nope something is very weird lol.
xxx
I think you have more then M.E. going on for sure.
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I had O Bands too but they do a blood test the same time and it had inflammation in it or something which made the LP negative for MS. BUT having said that no one tried to find out why? My neuro dismissed the LP results and isnt doing them now as he said they are not a diagnosis of MS only an exclusion of other things, but people can be sick with 2 things.
He prefers VEP test. I had two positive poles apart. 2008 positive and 2015 positive but more so.
xxxx
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Crazy Chick, I definitely agree with what you have said. It’s true when I was a child I really don’t remember anyone being sick. I believe the environment plays a huge role in health. I also believe it has alot to do with the food, the demand to feed so many people the food is not how it should be I.e forced chickens in factories and genetically modified fruits and veg. How do we know if we really buy organic? I was born and raised here and my mother was my father however (God rest his soul,passed 10 years ago). My dad was from South America and the rest of my family are from the west indies. They never ever get sick. I need to be nearer to the equator. I have had some much wrong with me it’s just not right. I am sorry to hear about your daughter being assaulted at school. I have never had any heart problems or respiratory issues. I personally know it’s not ME I just don’t fit the criteria at all. They are using the fatigue, I haven’t even had all results. I am no longer worrying but thinking what is it they could be overlooking? It’s very interesting to hear everyone’s point of view and opinions. I hope you are ok Lina
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I also had inflammation in the blood and was told most people do! Then I was asked if I’d had any fever, and I did not.
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Frustrating