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ME/CFS now a possibility ......

Hi Everyone I saw my Neuro yesterday & he says he has no answers for me. The tests I had 6 months ago were blood tests & they have shown low calcium levels and low Vitamin D. He suggested I get supplements from a Health shop, but no recommended levels. He has now referred me to a Rheumatologist who specialises in ME/CFS to see if that may be the problem I have. I certainly have major fatigue, especially after physical activity, but I don’t know if that would explain the pain (tight, gripping pain) in my legs and the inability to stand for long or walk for longer than 5 or 6 minutes. The Neuro said he would see me in 8 months to see what the ME specialist says, but after that he won’t see me anymore. I just feel so ‘lost’ tonight. I suppose I had built myself up for some answers yesterday, but I have come away with even more questions! After nearly 5 years of problems, Limboland is getting me down a bit. I so hope the ME guy can help, otherwise I’ll be literally left to deal with it all on my own. Feeling alone & scared as my life has changed so much. :cry: Thanks for reading - I value everyone on here - for your advice and also for just ‘being there’. Bren2 x

Lots of ((((((((((((((hugs))))))))))))) for you Bren. Limboland undoubtedly sucks :frowning: I hope the ME guy can help. Karen x

Hi Bren, as Karen said limboland sucks. Five years is a long time to suggest that you have ME/CFS. ME is classed as a neurological disorder by the World Health Organisation. You can have many different symptoms including symptoms with your legs. There are a group of people with ME called 25% and they are bedbound. My friend who at first was diagnosed with ME gave me a film to watch which starred Julie Walters called Wide -eyed and legless. It’s a true story and opened my eyes to ME. I hope the rheumatologist can find some answers but don’t be surprised if he says it isn’t ME. Maybe read some ME/CFS forums and find out what symptoms other people get. Stick around with us on here and let us know what the rheumatologist says. Jacqui x

hi bren, awwwwwww hun, you have been going on now for so long,and its not nice when you see the neuro,hoping for maybe something at last, you come away with more worry and despondency. Limboland is the worse place ever, i do hope you get your answers very soon and let us know how you get on with the rheamatologist,we are all here for you to talk to anytime you want, take care lots of love n hugs Chris xxxxxxx

Hi, I’m new here, but i’ve just posted because I was diagnosed with ME around ten years ago after being ‘tested’ for MS and having no signs on the MRI. My sister has MS, and beleive me, our symptoms can be very similar, its horrid, and debilitating, and comes and goes with a will of its own! However, I’ve recently had vision problems, and was told it is likely that I could have MS now. I have to say the neurologist I saw all those years back was a deeply unpleasant man, and the thought of dealing with anyone like him again is almost enough to make me put up and shut up. Can you get a second opinion? Perhaps you could pay for a private one off consultant, just to put your mind at rest? I wish you well, whatever the eventual diagnosis xx

It is the first time i have heard M.E. being diagnosed by the ruematlogist as it is classed as neurological disorder. As user02 stated it is actually a neurological disorder nothing to do with rhuematology. You need to see an M.E. specialist who knows what they are talking about. My daughter has M.E and she was diagnosed by the specialist clinic in Bristol, however, they are still not sure she has M.E. because she had demylinating lesions on her MRI but this can be normal with M.E. apparently which is odd. A rheumatologist can diagnose you with Fibromyalgia which comes under their umbrella. Really I dont understand why our neurologists are dragging their feet over M.E. when it is classed as neurological. My neuro doesnt even believe it exists so what chance have we mortals got if that is the attitude. Recovery from and severity of Myalgic Encephalomyelitis M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. It can also be fatal. Patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. M.E. is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of sufferers leaving many of them housebound, bedbound and severely disabled. One specialist found that M.E. patients experienced greater “functional severity” than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. Truly M.E. can be one of the most devastating and horrific illness there is, yet many with M.E. are subject to repeated medical abuse and neglect because of the way the illness has been dishonestly ‘marketed’ to the public as being psychological or ‘behavioural,’ or as being a problem of mere ‘fatigue’ or a ‘fatigue syndrome.’ Sub-grouping or refining or renaming ’CFS’ will only waste another 20 years. There is no such distinct disease/s as ‘CFS’ – that is the entire issue. For the benefit of all the patient groups involved; the bogus disease category of ‘CFS’ must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E. Due to an overwhelming amount of compelling scientific evidence, the World Health Organization correctly classified M.E. as a distinct organic neurological disease in 1969 – this classification/definition and name must be accepted and adhered to in all official documentations and government policy. PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill and vulnerable people on such an industrial scale is inhuman and has already gone on for far too long. This will only change through education. People with M.E. desperately need your help. ========================================================================================= Please visit A Hummingbirds guide to Myalgic Encephalomyelitis it is very imformative. I despair with our medical people in the UK until they get together and sort this out there are going to still be so many ,many many people in limbo land. My GP finally agreed that i more than likely have MS and they are treating me as such now although there is no treatment for me now as after 5 years of being in limbo land the damage is done, but i think the fact i fell over outside her office kind of convinced her that my illness is degenerative and not something like Fibromyalgia. I would have been quite happy to be told I have M.E. actually but I was told I dont have it as i had optical neuritis, and lesions on my spinal MRI. Dont be fobbed off but don’t for one minute think that M.E. is nothing because in actual fact as other poster said the symptoms are virtually the same as MS and just as debilitating. Big hugs. Do the research that’s what i did. IF it is M.E. think about what might have happened prior to you getting sick. My daughter had Pneumonia which is classic for M.E and was going through a really bad time in her personal life. Take care and I hope you get some answers. (Sorry i am rambling been poorly for weeks lol and my brain has not been exercised lol).

Hi again everyone - Thank you all sooooo much for all your kind replies. All your input has been so helpful. I needed the hugs, the reassurances that you’re ‘there’, + the information and advice too is invaluable. I’ve actually copied, pasted & printed all the replies off so I can read them again & again and get the benefit from the information. Thank you so much - this site really is a lifeline! You’re all valued so much. Love Bren2 xx

Hi Bren2, Just read your post and wanted you to know that you are not alone. Apart from my 2 lesions we are in the same boat! There is a new International Consensus on ME/CFS which can be accessed via the ME Association which defines ME (the neurological illness) as opposed to CFS (which includes post-viral fatigue syndrome, althlete overtraining syndrome, fatigue resulting from a major depressive illness etc - i.e. things that you can recover from). ME is defined by the World Health Organisation as a neurological illness (G93.3) and I am still bewildered by the lack of acceptance in this country. I intend to send a copy to my neuro and hopefully he will have time to read it! Hugs, Margaret

Auntiemogs wrote:

Hi Bren2, Just read your post and wanted you to know that you are not alone. Apart from my 2 lesions we are in the same boat! There is a new International Consensus on ME/CFS which can be accessed via the ME Association which defines ME (the neurological illness) as opposed to CFS (which includes post-viral fatigue syndrome, althlete overtraining syndrome, fatigue resulting from a major depressive illness etc - i.e. things that you can recover from). ME is defined by the World Health Organisation as a neurological illness (G93.3) and I am still bewildered by the lack of acceptance in this country. I intend to send a copy to my neuro and hopefully he will have time to read it! Hugs, Margaret

Hi Margaret i think we should all send a copy to the neurologists lol. Chronic Fatique Syndrome is just a symptom of many illnesses…including MS/FMS/ME/LUPUS/RA… Also CFS is a by product of over training etc. The doctors hand out CFS like sweets. Oh your tired then you have CFS and they point this to M.E. Bah humbug. M.E. is a stand alone illness I actually found a website a few years back where in the states the proffessor was wondering if M.E. is actually a benign form of MS… The problem people have with getting a diagnosis is that too many GP’s are still stuck in the year of the YUPPY FLU. People go to the doctor with chronic fatique and because you can have CF with so many other illnesses it takes too long to diagnose and people then end up with a physc label. We know there is no defining test for M.E. but the one thing that stands out amongst all the other illness is the lack of sustainable exercise and the results of doing something like running, swimming, or even walking a person with M.E. will take longer to recover and even end up in bed for a few days. Sometimes it is so bad that just getting out of bed is enough to trigger off a flare. IF you have fatigue but it is not worsened by exercise then the chances are you dont have M.E. HOWEVER, people with MS can also find walking, running and exercise hard work and when they get warm they too can trigger a flare because of the warmth so although the effects of the exercise are the same the reasons for the flare are not…if that makes any sense lol. I wish the GPs would take M.E. more seriously although there are more specialist clinics now. We need to march on downing street…i actually feel a petition coming on lol. :smiley:

Hi again! Thanks auntie moggs & mt for your kind replies. Gosh, I didn’t know the ‘ins & outs’ of ME/CFS, so am really grateful for your input. I hope the Consultant I see is as well-informed as you. Maybe I should take your E.Mails to the appointment lol! Thanks so much again for taking the time to reply - it’s really helpful. Bren2 xx

bren2 wrote:

Hi Everyone I saw my Neuro yesterday & he says he has no answers for me. The tests I had 6 months ago were blood tests & they have shown low calcium levels and low Vitamin D. He suggested I get supplements from a Health shop, but no recommended levels. He has now referred me to a Rheumatologist who specialises in ME/CFS to see if that may be the problem I have. I certainly have major fatigue, especially after physical activity, but I don’t know if that would explain the pain (tight, gripping pain) in my legs and the inability to stand for long or walk for longer than 5 or 6 minutes. The Neuro said he would see me in 8 months to see what the ME specialist says, but after that he won’t see me anymore. I just feel so ‘lost’ tonight. I suppose I had built myself up for some answers yesterday, but I have come away with even more questions! After nearly 5 years of problems, Limboland is getting me down a bit. I so hope the ME guy can help, otherwise I’ll be literally left to deal with it all on my own. Feeling alone & scared as my life has changed so much. :cry: Thanks for reading - I value everyone on here - for your advice and also for just ‘being there’. Bren2 x

hi there just to let you know that there are lots of us in this situation and often the only real support we get is what we give each on this site. on the old ms site there were a few people who were diagnosed with ME only to be later diagnosed with MS, i dont know why they dont pay more acknowledgement to our problems and give out more reassurance when we have to go through years of the unknown, it would certainly help. i have read that ME is something that you recover from and now its been said that it can also be progressive which is how it is for me. i am now in acceptance that i am ill and whatever it is called wont change that, yes i would have liked a formal MS diagnosis because it would have helped with meds and problems with continuing to work but i have to live with chasing a formal diagnosis and im not strong enough to contnue to do that, its just more detrimental to my health. it is getting harder though as now i often dont even have the energy to hold a conversation and my partner of 25 years is making comments that he’s got no one to talk to of an evening etc. he actually nearly jumped out of his skin last week when i said “dont forget to get sugar when you go to the shop” :o "made me laugh though) i either just sit in a daze or go to bed straight from work. there are things that i feel are not symptomatic of ME, such as the electric shock type pain, stomach and bowel problems etc so im not fully convinced its ME but whatever it is i feel kind of accepting of it and the limitations it places on me. i’ m rambling now so i will just say, that i wish you the best of luck in moving forward with your illness and at least we have all got an amazing place like this for support. only today i have been shown a valuable piece of information that has helped me understand my problems with regard to sitting down and feeling progressively worse the longer i sat. Stay strong and take care of your emotional wellbeing as well as everything else. lots of best wishes to you mandy xxx

Hi Mandy. Thanks so much for your reply. It’s so amazing to find people on this site who know exactly what we feel like isn’t it? Yes, ‘fighting for a diagnosis’ is exactly what it feels like - and it’s so hard. I sometimes wish the consultants could spend just a week in our shoes & then try to do ‘normal’ things. They would be more understanding then! I know what you mean about just sitting making us feel worse. Today I was invited to some friends’ home for a meal & by the time I had sat & ate, then sat & chatted, I felt terrible. My host looked at me & actually asked if I would like to go home because I looked so awful. I was pale & exhausted. I too saw the post you mentioned about orthostatic hypertension - I never knew such a thing existed, but boy, can I relate to it! I feel for you Mandy & so hope there is a breakthrough soon for your own diagnosis. That would open doors for more support wouldn’t it? Take care & thanks so much for taking the time (and energy) to reply - I appreciate it. This site is indeed amazing. Bren2 xx

I believe in 10 years or less that it will be known that M.E. will be known as a benign form of MS. I found research in USA where a professor links the two and had some good points to it. Watch this space I honestly think something will this way come…as for me the symptoms are just too similar and people who have had M.E. have gone on to develop MS or be diagnosed with MS … :ugeek:

Maria, the 25% of people bedbound for years with ME and the ME patients who die of sudden cardiac arrythmias can’t be called benign. The problem is them lumping CFS and ME together when they are two distinct disorders. Jacqui xx

Hi Pauline. I’m so sorry you’re going through a tough time just now. All the changes and uncertainties get us down don’t they? I do hope you’re feeling a bit better after such a horrible weekend. Pleased you felt able to come and share with us. This is a brilliant site, for both knowledge and support - everyone is so helpful. Do stay with us. Take good care & let us know how you are doing. Bren2 x

Hi Bren2 limbo land :frowning: not great Iv’e been here over 3 years :frowning: hope you get sorted out!!! all my very best Tracy x

Thanks lots Tracy. Just being able to support each other 'cos we know how each other feel means a lot doesn’t it? I appreciate your reply. Hope you get some answers soon too! Bren2 x

your welcome Bren2 support is everything family try hard but util you have it you just don’t no how it feels. plus i don’t like to moan to them all the time :roll: or make them sad. So to have chats and get info on here is great. tracy xx