I HAVE FIBRO BUT THINK I HAVE HAVE MS... - Fibromyalgia Acti...

Fibromyalgia Action UK
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I have decided to go abroad to get a diagnosis, as my Gp and specialist have not listened to anything i have said, they have tried to make me feel like i am making up all my health problems, which all point at having MS, its not in my head when i lose balance and am on the ground being picked up by strangers, my blurred vision, and slurred speech and memory loss is all very real, the constant agony i am in 24/7, the wrist pain and numbness in my arms ,and legs with pins and needles is also very real, the fact i am incontinent and cant walk more than a few steps, and the horrendous muscle spasms i have that keep me awake all night, the fact im so exhausted all the time and the lumps on all my limbs, how is all this in my head, you can see the lumps, and i have constant migraines and blurred vision,i am told because i can move my legs i have not got MS, my sister and mum have both got MS, and to put it nicely they are not in half the pain or have half the problems i do, i have not had a lumbar puncture,and because an old scan i had 10 years ago shows nothing, they are saying its in my head, ive had enough of being made to feel like i am making it up, i will go abroad then i want answers for all the suffering ive had to do for the past 7 years

35 Replies
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in reply to Hidden

5% of ms ers have no lesions on the brain or spinal cord,Ive got most if not all of your symptoms, MS has been mentioned, so Im stil l on the journey for a firm diagnoses


Hi yes i had a brain scan a few years ago only because they thought i might have a brain tumour because of my blurred vision, memory loss and slurred speech it came back normal, but so did many people i know including family with MS, have normal MRI scans, they had to have a lumbar puncture test to show it up, i have not had one, even though ive asked. i had a blood test come back with abnormal white cells but i was told it was just me, i feel like they think i am making it all up, im house bound now things have got so bad, yes i was diagnosed with Fibromyagia,,but i also have alot of symptoms that don't go with it, im so desperate to know whats wrong, as im going downhill so fast x


i still think i have fibro because i cant handle any pressure anywhere, but i also think something else is very wrong, my specialist did not even examine me, he just said because ei can move my leg i didn't have MS, i asked for tests, he then said it was all in my head and i should see a counselor, i wrote to him after as i was so upset to tell him my symptoms to ask why i had not been examined and not been allowed tests , he just replied again his diagnosis it was in my head, i am fuming and am now looking to see a specialist abroad x

Hi angelheaven,

I am so sorry you are going through this. :(

I too thought i had ms back in november and i went to a neurologist and i thought because i had fibro on my notes that he wasnt taking me seriously. My gp wasnt giving me any answers to any of my symptoms which just didnt fit with fibro.

I still thought i had fibro aswell.

I had a clear mri and he wouldnt offer me anything else, so i wasnt happy.

I went back to gp and she said i will send you to an immunologist to see what he can find.

Well i have now got a dx of fibro, cfs/me and hypermobility and just got my bloods back and i have a vitamin d deficiancy and low calcium. but also hashimotos disease and some other auto imunne disese of my stomach that i cant absorb b12.

I was absolutly positive i had ms until he found all this. Could you ask for an immunologist?

I dont know where you are from but this was in newcastle rvi.

I hope you feel better soon and get some help, but we are here for you and you can always pm if you wanted to. :)

By the way i have all them symptoms you have said.

take care, kel xxx


Thank you for getting back to me, i will do this, i will also be changing GP,s tomorrow , as for year now she has not listened to me ,to the point i went a few years ago about a mole that had turned a funny colour again i was told it was in my head, it turned out to be cancer, thankfully i got threw it, and got the all clear last year, but all the symptoms ive explained i have , have been going on and getting worse for years to the point i can only stand for seconds without collapsing, the pain is so bad i feel physically sick. i just don't understand why they treat people as if they would make up there symptoms,, you can see all the lumps i have all over my arms in my legs and now one is on my lower back just under the skin, but ive taken your words of advice on board and will ask anything just to know whats wrong so i can try to get some help so i can live my life. thank you to all of you for you advice xxx

in reply to Hidden

These lumps could be lipomas. Have you had any of them excised? If not, ask to be referred to a dermatologist or minor surgery clinic. There is also an illness called Dercum’s Disease which can cause fatty lump growth.

in reply to VintageMustard

Just to let you know this person is appearing as Hidden because they have left the community, therefore will not reply to your comment :)

Ohh i really feel for you, i have all those symptoms to, except for the lumps, i have swelling at times, but not lumps, I really do no how you feel like loads of other suffers for me it was years before i got diagnosed, and made to feel i was makeing it all up and it was all in my head, but after years i got to see a rhuematoglist and within 5 mins he told me i had FM, after a simple test, i just burst into tears and sobbed my heart out, just to no that it wasent all in my head and now the doctors could see it and they could now beleive me with all the symptoms and pain i was going through day in day out, it was such a reilef to have a name for what was wrong with me. My heart goes out to you it truely does, and i agree that you should not have to go abroard to get a full diagnosis, if your doctor is not listening to you then change and find one that will,stay strong and sending you big hugs and loads of love xxxxx


Thankyou jay jay, its so nice to know there are people who understand,as when you are constantly made to feel like your making things up in your head,

it gets to a point, of really struggling of what to do, to be heard. Its so wrong, they think because you look normal you cant have a problem. I think the Doctors and Specialists should look on these sites to actually get an understanding on what damage they are doing to peoples life's, i hope you have found some way of dealing with the pain . Jo x


Hi i feel so sorry for you with all this going on and a Gp that is not listening and trying to fob you off , i too would either change your gP or go another surgery before you go to the expense of going abroad , try this first or go back to your Gp armed with wads of paper of all your ailments (what i di) and sit rthere and make him/her listen if they still fob you off report them to the practice manager at laest you have given them 1 more chance to diagnose you and they will see this is not your first appointment good luck with that love to you diddle xx

Oh dear God. First of..the one thing you NEED to do is CHANGE your DOCTOR! You know, I was once told, after putting up with a doctor who literally told me..and I quote... " If your just after effing sleeping pills, I'll give them to you - if it'll shut you up"" I just got up, walked out of the surgery ( i'd been with since childhood) and we went to another surgery. I was told by one doctor.."listen, pain in the head, is pain none-the-less"..yep, there are some very UNcaring doctors out there. Get your's changed..and FAST!...They have NO Loyalty to you..so why in heavens name do you have loyalty to them? ( happy to say that I now have a truly wonderful doctor..who's THE most caring person, I've ever met.)..try and have a hunt around for a Spanish Doctor. In Spain, Fybromyalgia is a fully recognised syndrome/disease. They even have special clinics for it. Or...for now..you need to get yourself ready....take all the pain meds you can muster and go to A&E...or...better still..when the loss of vision, or ability to stand strikes ( or any of the other symptoms)..call an ambulance. It's your right..don't feel that you're calling them away from anyone else..you NEED help..and fast. ( also, as a patient, you have what's called the patients charter. You're allowed to see and read ALL of your medical notes....I'd suggest you do this also...this way, you can see what this so called, doctor A: thinks is wrong with you, and B: also what he thinks of you?) BTW, if you go to the hospital later-on..and are kept waiting for more than 4 hours..they have to keep you in..once you're in their care..they have to find out what's wrong with you. ( I only know this, because I was ill once with a nasty virus and got to hospital late on..and was kept waiting and waiting - once called through)..they had to admit me for the night, while they waited for results. I didn't want to stay..but was told it's hospital policy) When ( and if you muster the courage and the strength) make sure you tell them EVERYTHING! Tell them what your doctor thinks etc and tell them of the history of the MS in your family.

I dearly, dearly hope and pray that you get seen to..but more so, listened and treated.

take care, dear heart. And remember, CHANGE YOUR DOCTOR!

God bless hun. *gentle hugs*

Hey and if none of that works..write to your local paper and tell them!! That'll make them sit and bloody listen!!! *fume*

Sorry for the 'naughty' word...reading this has made my blood boil!!!!

Doctor? ...Bah!

Angela i am totally the same i have had the mri scan which did not show up anything i have cramps/ mussel spams Lyrcia help me a lot with them, as you say i feel like 90 as i fall so much and i bruise so easy as well. i to went to a neurologist and i also feel because i had fibro on my notes that he wasnt taking me seriously although he report back that i had little feeling in my feet (which i knew) i cant kneel at all as i get pins & needles at once and cant get up. i have been told that it is a fine line between fibro , ms, & me and one neurologist could say you have fibro and another could say ms. my neurologist also told my gp that i should not get Tramabol i take sr 200mg morning and night and 100 fr in between . my gp is lovely and told me that's OK for him to say he is not the one than is suffering they don't take all the pain away but on a good day i can function well and can still drive although i changed my car to automatic which really helped me to get about. i am lucky that my kids are 20 & 15 and have a large family which are super with me but its hard to see my mum of 83 more able then me some days. i take one day at a time and i bull on and suffer later ( not a good thing)

think you everyone because i do feel this web site keeps me sane.



I got the forms to get help with to fill out as i cant write anymore either as my wrist and hand is so painful and i drop things all the time also! i will make an appointment to see a new Gp, I do have 2 grown up boys, which help me so much , i have had enough of the specialists and doctors who think they can treat people this way, sounds to me allot of people on here are or have been through the same thing.I really want to thank everyone for their support x

yes i feel the exact same, i had an MRI about 12 yrs ago and it was clear, now im classed as just a pest by GPs and rhumatologist alike.

I have alway felt my symptoms are more like MS than Fybro.

Good Luck i hope you get to the bottom of your symptoms and learn to cope and live with them.

I would be interested to find out what happens if you don't mind.


I will keep in touch and let you know, if i find someone who will listen ill let you know so you can do the same, maybe we should all do a protest outside the houses of parliament about whats happening, make them stand up and listen then Jo x I know something is very wrong with me, and you know there is soothing very wrong with you, we are not making it up and its not in our head, id love them to be picking me up off the floor and tell me my head told me to fall on the floor, or my head told lumps to grow, etc etc how the hell did they become doctors ?

Hi Angelheaven, what awful treatment you have had. Obviously you need to see a professional as none of us are. My brother has Primary Progressive MS and he had a lumbar puncture as well as an MRI. Even when he was first diagnosed with PPMS over 10 years ado he could walk short distances, so what she says about your legs is tommy rot. People with Relapse-Remit MS are able to walk sometimes during a remission, so there again your GP is talking twaddle. Certainly your symptoms sound consistent with Relapse-Remit MS. The MS Society are good for information and support too. Best wishes in finding someone who listens and understands.

Hi Angelheaven;

i know just what you are talking about, at times my speech is slurred and i stammer a lot i know what i want to say but i can not get a full sentence out but that only tends to come when i have been stressed or suffering from depression. at on point two years ago i started getting blurred vision and horrendous headaches, when i went to the doctor and he examined my head when he gently pressed on my temple it was very tender straight away i was sent to the emergency room at the eye hospital anyway to cut a long story short they couldn't find anything wrong so the doctor felt i had contracted temperal ateritist , which is an inflammation of the temperal artery which affects the eyes and could cause blindness at an instant. i was put on a dose of steroids for about a month. it did do the trick. it was thought it might not have been it as it usually only affect the elderly.

there are many symptoms attached to FMS that are similar to other illness'. that is why it takes so long to diagnose. i get dizziness excessive tiredness to the point where i can not even function and just have to sleep. when i was at work on several occasions i had to be carted off to the hospital cause i had calapsed or had just blanked out. i could mention so many other symptoms but it would take to long lol. i dread to think how much the NHS has spent on xrays, scans, heart traces, blood tests, etc etc, before i was actually diagnosed. now i know that i had had FMS for many many years before cause i had so many unexplained symptoms over the years.


I have MS and FM.

It took me years to get anyone to listen to me, and that is for one simple reason. MS and FM have many of the same symptoms. They take their decisions very seriously when dealing with people with FM as the CFS test can cause problems on it's own, so they only do this if they think there is a serious chance.

I am one of the 5% that doesn't have the markers on my spine or brain. Mine got diagnosed when I started losing all the feeling in my legs and would lose my bladder control causing accidents. I also started falling, walking into walls for no reason. I would get words muddled up, forget words totally. Forget how to do things plus some other bits and bobs. I also have to have Diclofenic injections for what I call the midgies.

I only got diagnosed by a CFS tests and my symptoms. The CFS test knocked me off my feet for a week. I had headaches like never before and was in agony.

I can understand the need to find out if it is more and the frustration at finding out. I am now 34 and I got ill at 21. It has taken me that long to get my diagnosis of MS. It is a long hard fight but keep going. Also I think the advice to change GP is a great one.

Fell free to PM me if you want to chat to me more.

Hi Angel

I really do feel for you what a time you re going through,,I do hope that you have started the ball rolling by changing your G.P, I agree with Ocean if things get bad call out the ambulance as you need help and answers fast.

Take care and keep us posted Hugs Ruby xx

i too thought i might have ms because i have two sisters with it. The fact is though one has sadly passed and the other is in far less pain than me.

When u go to the dr try to describe one thing at a time instead of blurting it all out. By doing this i have been diagnosed with carpal tunnel (feeling of numbness and pins and needles in my hands) i also have raynauds (numbness and colour loss in my fingers and sometimes feet)

Also insist on an mri scan. I did and ms was ruled out therefore my symptoms were 'in keeping with fibromyalgia'.

You need to demand a course of trial VitB12 injections and folic acid. The more I read about this, the angrier I get. When are the medical profession going to wake up and see the connection between B12 deficiency and all these problems? It doesn't matter if your B12 level is normal, you need to try the injections.

I'd also be interested to know how many of you have a lot of dental amalgam fillings (the silvery-grey ones).


Hi yes been taking note of everything people have said, see doctor tomorrow, and will put everything to them, if i don't get anywhere and i eventually do get diagnosed, i will be seeking legal advice on what to do , about the way i have been treated for years, by the way i have those silver fillings, why do you ask ? also allot of people who have MS i am told , half the time it doesn't show up on MRI tests on brain or spine that's why i need the Spinal Fluid Tap Test, even though ive heard how painful it is, it is worth knowing finally if its MS or something else i know i have fibro, but i still know in my heart something else is very very wrong with me. xx thanks to you all xx

I can really identify with this love, fibro symptoms vary so much from one person to another that it can mimic other problems (MS in particular) I am also on a quest today to find a doctor who might know what he's talking about.

Some fabulous responses to your posts.


good luck with finding a doctor who understands x

OMG!!! I am over the moon. I have just registered with the doctor who was my GP, but then moved to another practice which I couln't register, but he is now quite close to me, so I am feeling much better mentally, I know I will get more from this doc than the current ones.


Im so pleased for you x

I'm sure all GP's seem to think that everyone who goes to them are after a 'quick drug fix' I would love to explore alternative therapies rather than having pills and potions. My mood is good this evening, am going for a long soak in a nice hot bath with muscle relaxant oils then an early night since I barely slept a wink last night.

There is much controversy over dental amalgam and its connection to MS. I had 16 of these fillings (which are 50% mercury) and became very sick with all the symptoms of MS as well as CFS, nerve damage, loss of bowel and bladder function, suppressed immune system, inability to sleep, etc, etc.

Eventually, I realised I had all the symptoms too of advanced B12 deficiency and asked my GP to be tested. Although my B12 was normal, he allowed me B12 injections and the improvement was instant and spectacular. However, I have needed 3 injections a week to stay that way, as well as daily folic acid. I then unwittingly became exposed to more mercury from a broken fluorescent bulb and my condition instantly deteriorated. Once I found out about mercury being in my fillings, and how I'd responded so seriously to the inhaled mercury vapour from the lightbulb, I began to take it seriously. So far, I've had the appropriate heavy metal toxicity tests (which showed a definite sensitivity), my fillings removed and am on treatment to remove the mercury from my system. Unfortunately, the nerve damage has been there for so long that it is almost certainly beyond recovery but I am so much better than I was just 3 years ago. I was investigated for MS at one point but nothing showed on the MRI scan. A later one did show 'high signal' but since I also have scoliosis, it was difficult to interpret. Some cases of idiopathic scoliosis are also now being suspected as being the result of mercury poisoning but governments will not admit the dangers of amalgam as it would cause everyone wanting them replaced and probably quite a few lawsuits too!

There are plenty who rubbish the whole idea of dental amalgam causing these problems but the amount of mercury in an average filling is around 5mg, which is 160,000 times the US EPA's maximum safe level of 0.03mcg. Multiply that by how many fillings you have!

There is a lot of information on the web about this issue but here are two links as an example:


in reply to AndreaM

This is the first post i've made on this site , but i've just returned from Thailand 2 weeks ago where i'd gone to have all my amalgam fillings removed . I was diagnosed with Fibromyalgia on January 20th this year and was virtualy housebound . I was unable to walk some days and had all the symptoms - memory loss , blurred vision at night , constant fatigue even to the point of falling asleep whilst eating . I could have filled a book with all the symptoms . The reason I went to Thailand to have them removed was the cost . To have 10 amalgam fillings removed safely and replaced with white composite fillings cost me less than £500 which would have cost me £1500 to £2500 in the UK . Overnight , from having the first fillings removed , all my symptoms vanished and I have not had a single one since . I've got more energy , enthusiasm and optimism now than I had when I was 20 , and i'm now 38 and this change happened instantly . The research I did into mercury poisoning left me shocked at what I discovered about it and I've no doubt whatsover , amalgam fillings were the sole cause of my Fibromyalgia . I would recommend it to anybody considering it , providing you choose the correct dentist . I'll be more than happy to show the piles of paperwork on Mercury poiusoning which I have should anybody want to read them . The fact that the World Health Organisation has been trying to get amalgam fillings banned worldwide since 1979 pretty much says it all . Their reports and test results are all available on their website for the public to view .

angelheaven after reading what you have said and what other people have said. and what you have said . it sounds like you was saying things that has gone on in my life. i have been ill for years and the doctors look at u thinking yes ok then thay put things on there computer's and so if anyone understand's i do as mine has got so bad within the the last two year's. but i have to deal with it and all my family worrys about me. so i understand angelheaven


I wish we could all find some one to take us seriously, what makes it hard is having to feel like this and get through a day ,because you know it will be the same again the next day, i cant remember a time i wasn't in absolute agony, If you need to talk im here Jo x

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