Neurology

All your fibromyalgia experiences, questions and answers.

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Neurology

Postby Tel1 » Fri Oct 25, 2013 1:47 am

Hi All..... long story short.... I wen to a neurologist as my GP thought I *might* have something like MS, Lupus Limes Disease etc etc..
The neurologist checked me over for a good 50 mins, and said that he thought everything was fine! I went for the last lot of blood tests to rule out everything else which was blood test number 9....they all came back fine * thankfully * the only thing was, was a slightly raised ( ESR ) which I think mean some kind of inflammation...the offered me a brain scan just to be 100% sure all was ok, but at the time I said, no I would leave that, as I hated being shut in an MRI scanner ( this was October 2012) in December my GP diagnosed me with Fibro, and then the Rheumatologist confirmed it in March this year... I kept on getting, feelings of balance problems, aching arms, legs and hands IBS all the usual fibro complaints... In the end I decided to ring the neurology dept and spoke to the secretary, and I said I wanted to go back to the see the Rheumatologist, she said, ok we can do that... so it was arranged for August and I got there, the rheumatologist said, oh how did you get an appointment, who referred you? I said I referred myself...he said to me *what!! how did
you manage that, I said because the secretary agreed with me that she also thought it would help if I saw the rheumatologist again,
however this time it was another one of the team not the one I saw before... He asked me why I wanted to see them again, so I simply said that what I was experiencing couldn't be Fibro? he said well.....Fibro is all about the brain not working properly :yikes:
I said to them, yes I had an idea it was something to do with that, he said to me ... look... if you want a brain scan we can arrange things for you to have that... then I said to him, do you think I *need* a brain scan? and he said no you don't...So I said why did the last rheumatologist offer me a brain scan? he said it is all part and parcel of the service we offer.. so I said, that's good, but does that mean that people like me with a brain not working properly ( which they said was what Fibro related to ) do we have to have a brain scan to put ourselves in the clear of anything else, or you in the clear of doing all the investigations? he said... I don't think you have MS or anything like that, so a brain scan is not really needed.. so I said ok... I will leave it all now... so we shook hands and I left.
the two nurses in the room at the time both said to me, that I shouldn't worry about feeling the way I do, it's all down to stress anxiety and Fibro... I thought to myself.. Hmmm!! I wonder... After I left the room I walked down to the appointments area and said I have just seen a rheumatologist and they offered me a brain scan but I said no... but I do want one, so they scheduled it for a few days ago.
Naturally as I had the scan , I have been worried to death thinking to myself, they told me that brain scans can flag up lots of things that people have had all their lives, so it would only be something else to worry about if that happened, so in one way they were advising me not to have one because they thought I would react in a certain way to anything they found, and that is probably the reason they suggested that I didn't have one, but I have now found out that it was all clear, so now I can relax a little bit knowing that I did the right thing to help me not worry about ( what if ) I have read several articles that people with Fibro have something called a raised or lower level of substance P in their brains, so if that was the case would that have showed up? or wouldn't they have been looking for that? the reason I ask is, if there are not blood tests or scans for Fibro, they can only go by what you say and base a diagnoses on that....I just think most of us don't really have Fibro at all even though we have been told we have it . I just think I am just a nervous person underneath and that is all it is really as when good happy things in my life happen and take place I don't feel I am ill at all, so I have come to the conclusion it is a slightly more on the mental side of things and we live which make us the way we are?
What do you all think.? :hugs:
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Re: Neurology

Postby whoami » Fri Oct 25, 2013 3:16 am

First, to add to your confusion, there is now a blood test to confirm fibro. It is not offered in some countries and I have heard it to be very expensive around $750 US money.

Tel, I feel you are over analyzing things. Your Dr was right to do so many tests to rule out other causes for your symptoms.

The secretary was out of line to talk to you about your illness and that you needed to see a rhuematologist again. I am sure she got an ear full from the Dr.

I don't understand why you felt you needed to see him when you had already decided you did not think you have fibro. Also I am confused as to why you would ask for a brain scan after the Dr told you one was not necessary and you agreed. The Dr was right, your results were normal, you did not need one. I don't think very many patients have a brain scan to diagnose fibro. A brain scan does not detect levels of substance P.

You don't believe you have fibro, right? Are the treatment/meds your GP is giving you helping to manage your symptoms?

If you don't have fibro and nothing else shows up on tests then what is the cause of your symptoms?

Where do you go from here?
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Re: Neurology

Postby painprincess1 » Fri Oct 25, 2013 9:55 am

Good morning sweetie,i did giggle when u said .. long story short.... hehe.
now as PP said i think your over analyzing things.i know 100 present in my mind im not making this happen through stressing out.its not in your head what i mean by that is you didnt make it happen .yes it is a brain problem and yes u can make it worse by worrying.i think u need to sort out your panic attack maybe im wrong but to me u sound like u have them. cose u sound like i did many years ago.
i have only seen my rhuematologist once .when i asked the dr if i needed to see him again he said why.i trust my dr to no if something else is wrong with me.and try to think this way anyone of us could be walking around with anything and not no for years thats life my grandma died of a brain tumor and heart attack at the age of 54 .i have never had a mri since being told i have fibro and im not going to worry about one now unless my dr tell me i need one.live darling don't waste your days wondering what if its hard enough coping with fibro without what ifs.most ppl here don't believe they have fibro to start with your not alone there.so sending u lots of big hugs and loads of love .come here often you will be surprised what you find but mostly you will get a scene of not being alone xxxx
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Re: Neurology

Postby Tel1 » Fri Oct 25, 2013 12:15 pm

Hi All....

God...!:)) I have made a mess of all I said eh)) but in real terms, I still get the balance problems, the feeling like I have had
a stroke every day, my face goes down one side in the mornings and all the other fibro related things... I keep saying to myself how can I have Fibro? is this really what it does to you as I haven't heard of anyone who has what I have as such:)) That is why after all was said to me at the hospital that I decided that perhaps if I had the brain scan, it might show up something ( not that I wanted it to ) but
I was convinced that something must be wrong inside my head because why would I get what I do..... Now that the scan was clear
*thankfully* but I have seen on the Spine and Brain foundation that not all MRI scanners and brain scans show up everything that
could be wrong...At the end of the day, I know there is something not right, but who is going to tell me what it is?? :yikes: :yikes:
In the meantime, for now, I will just have make myself believe that I am ok...I think I need to go to a mental unit so they can sort
me out :yikes: :yikes: :-D
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Re: Neurology

Postby *Lisa* » Fri Oct 25, 2013 1:27 pm

Hi Tel :-)

I have the moderating power to be able to read all your previous posts and so i decided to do this for your case/topic to try and see if i could help in anyway as you have been through such alot these past months. :hugs: just to try and piece together how your symptoms effect you and whether i could explain whats maybe goings on in a fibro way.

Now i did pick up on something. Have you ever seen a physiotherapist? chiropractor? oesteopath? I say this because reading up on the pins and needles / chest pains etc... Im wondering if you have some muscle stiffness pressing on the nerves?? this is very commen and stiffness is one of the main fibro symptoms. You need to be checked over for muscle tension if you have not.

Another reason why i say this is because the NHS direct (many years back) were gonna call out an ambulance on me as i had all this tingling / chest pain and weird sensations down my left side. I said no and called my GP straight after to explain what was going on and he suggested to see a chiropractor as the symptoms could also have been of a trapped nerve in my neck / back.

I did this and found my body was from top to toes in severe stiffness and this was pressing on the nerves.

The more tense / stiff we get the more it presses on the nerves or in some cases they can get trapped.

Now if your really stiff around the neck area this can make you very dizzy and off balance. Im no doctor but have experienced many frightening and weird symptoms to know.

The symptoms for me became so intense and frightening it caused anxiety. I became very aware of every sensation in my body and panicked all the time wondering what it was.

Costochondritis is a commen associated condition this can also cause chest pains like heart attacks and breating difficaulties.

I many a time (and others which is normal) felt it wasnt fibro and something more serious (not doubting you) as people (professionals) dont realise these distressing symptoms cause ourselves to analize whats going on. How could an illness like this cause so many awful symptoms. Well it does.

I hope this maybe of help? Its an awful distressing illness and we all understand :hugs:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Neurology

Postby Tel1 » Fri Oct 25, 2013 9:26 pm

Hi Lisa :-D

Well it seems you have read my dreadful background:)) This is what I mean Lisa, surely this Fibro can't be all of this that I have?
but like you , like others have said to me that they think it is.....I just keep saying to myself that I really must be mental, or that my body just does not function like a normal human being otherwise I just wouldn't have all these symptoms or be thinking the way I do.

The worry is with me, that when I speak to people, everyone seems to have Fibro in different ways.. but how can that be??
If you have headache, the next person wouldn't get nose ache would they:))))? see what I mean:) Yes I agree with you totally about how one feels when all these alarming symptoms appear, and it just totally frightens me to death, and I think to myself.. *now* what??

I use to have such a wonderful life, jetting here, jetting there, and I was working in the airline industry and had an outrageous life
living in London and mixing with the celebs, and now look at me,:)))) I just can't cope with my body in the way it restricts me
from doing all the great things that I never use to think twice about doing. Oh GOD the times I have gone to A&E because I thought I was dying, pains all over me, chest pains you name it, and it just makes me feel an idiot afterwards when the doctors just say, you are *fine* I could just scream at them saying, do you know the hell I have just been through yet again and you tell me I am fine? I look at my elderly parents in their late 80s, they have none of this and so I just find it hard to tell them when they ask how I am.

I assume that I am not the only one on here that has gone through all this, but that is why Lisa, I just thought to myself, I just must
be mental or that I have an alien body, especially with the feeling off balance, then I get panic feelings, then I am alright, then I get
a shooting pain going through me, then I get the chest pain, then I get an upper back pain, then a migraine the list goes on...which you obviously know yourself from what you said about what you went through... One thing that I don't like is that on my hospital notes when I was diagnosed with Fibro it says in the diagnoses of Fibro/Anxiety, so therefore every doctor who looks through my records will note straight away, oh we have one of those!!! and I feel that when I explain things, they just think, yeh keep going, what else is wrong with you...and so on. Thanks for your lovely support and I do hope that you are ok as well.....I use to go to a Fibro group, but they are all worse than me moaning about this symptom and that symptom:)) so it just makes you feel wonderful :) :yikes: :yikes: I think it would be better for me to see a 100% proper Fibro doctor who can spare me two hours or so to tell him everything about how I feel. I think that should be made available for everyone who has this hot and cold unpredictable complicated condition.... :bricks: :hugs:
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Re: Neurology

Postby whoami » Fri Oct 25, 2013 10:30 pm

Tel....Let me be honest with you.....

..Even though fibro can present itself in different ways, different symptoms..

.. You are ..exactly....like the rest of us

Tel, I think you are so stresssed out about thinking there has to be something else wrong with you that you have got your body going in a circle.

You maybe are looking for something that isn't there and because you can't find it you go into a state of anxiety. Anxiety increases pain, migraines and every other symptom fibro can throw at you. Then because of all those symptoms presenting themselves at once you think this can't be fibro but something else. ....then around the circle you go again.

Tel...your Dr's have been doing the right things. There is no fibro Dr. Fibro is treated by a group of people. Your Gp, possibly a rhuematologist, maybe a pain clinic and occassionaly a psycologist. There are other forms of treatment.

Tel....I am suggesting you write a letter explaining exactly how you feel, visit your GP and give him the letter to read. Ask him if there is anything he can do for you. A new treatment, meds or maybe a pain clinic.

Tel....fibro is a very complex illness. There is no quick fix, no magic cure. We have to face reallity, this is it! In saying that, with help you can learn, no you will learn, to accept and learn that you can live a very happy, productive life. It will be a different life but still a life.

Tel.....Remember, believe it or not but we all at some time have felt exactly like you are right now. You are normal, normal in fibro world. Please, see your GP again. Please, don't look for something that is not there. You will be much happier. ....You are not as you put it..mental....you are normal. A

As far as your medical file saying fbromyalgia/anxiety. Dont think that they are thinking ..one of those...I find that insulting. Me as well as others have those same words, words stating symptoms, honest symptoms. They are there so we can be treated, not patronised.

Tel...sorry if I offended you, I tend to speak the way I feel. x
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Re: Neurology

Postby Tel1 » Sat Oct 26, 2013 12:07 am

Hi there:)))

I agree with you totally... :)))) but I have done all that you have suggested countless times before with writing letters to GPs
Doctors, the hospital (pals) office..... but it doesn't do any good, it just turns into a medical row about who is right :crazy:

last year I was brought in by ambulance at 04.45am due to the most dreadful pain all over my body... they didn't know what
do with me, it was as though I had woken up in impact ( like waking up after falling off of the 10th floor ) I thought I was going
insane, I just couldn't believe it was happening to me ( for what reason ) long story short, when I left they gave me a discharge
letter for the GP which they would have sent to the GP anyway:)) but it asked me to go for an MRI scan two weeks after my discharge
to see what was wrong if at all.... I thought to myself why 2 weeks after!! why didn't they do it there and then? all *very* odd.

After I had the MRI scan, a week after that I had to go to see the doctor who I was under while I was in hospital.. He said to me,
how have you been? I said, fine.. he said well in that case I am going to discharged you from my care.. I then went on to mention
that I came to a conclusion that I thought just maybe it might be my upper spine that was causing the problem, he said to me, oh well you know your body better than me, it could well be... I thought to myself, what *is* this?? he was supposed to be the doctor and
gave a reaction like that...that's what I have gone through time and time again:)) I think we are all alone in this terrible Fibro world.
I think, I will just have to get on with life the best way I can, and keep my symptoms and thoughts to myself like millions of others seem to do. We are all speaking to each other one here as we think we are all alike and telling each other what problems we have, I don't think it's a good idea after all. :hugs:
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Re: Neurology

Postby whoami » Sat Oct 26, 2013 2:55 am

I find talking on here makes me feel part of a family. We can relate to each other. We cant know exactly how the other feels even with the same symptoms. Everyone's pain tolerance is different.

I have like you been taken to ER numerous times. The sad thing is, Dr's can only do so much for us. The medication I am on is about as strong as you can get and all they can do is literally knock me out for a while and let things settle down.

You have done what you can letting Dr's know how you feel. Sometimes there isn't anything else they can do. That is when it is so hard for us, the patient.

It takes a week or two here to have an appointment for an MRI. They only do them right away if it is a case of life and death.
If there had been something wrong with your spine it would have shown on the MRI and then he could have treated you.

What is your treatment right now for the fibro as far as meds, physio, excercise? I really find the pain clinic helps. The psycologist there is great, if for nothing else I can vent and she gives me a completely unbiased opinion.

If I think how frustrated we are as patients trying to deal with fibro, I can't imagine how Dr's feel when even with all their knowledge and access to information and they still can't help us some days.

Tel, really all we can do is trust that our Dr's are doing their best and for us to do the best we can. x
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Re: Neurology

Postby Tel1 » Sat Oct 26, 2013 8:42 pm

Hi there:))) Yes I agree with you about letting the doctors do what they see fit... it is the only route we have.
But I also think that all of us Fibro people are trying to use each other as doctors:))) you *know* what I mean eh:)
I just don't think it works a lot of the time... my GP said to me keep off of forums it can turn into medical rows between
people. I know that hasn't happened on here to me, but what *else* can we do, as although we have to trust the GPs and
doctors, we have so little time with them and everything is rush rush rush before the next patient is coming into the room:) :yikes:
I remember a few times I have asked something and the GP has said to me, well we will talk about that next time, but I have said
on many occasions... this is the UK, either the NHS or Private everything is rushed and they have very little time to really sit
down talk through everything.. on the other hand we have probably go so many questions that they can't answer anyway, so
that's why we are on forums like this trying to find out from each other what Fibro is really all about, but of course everyone
is different and suffers differently. We can only but try to ease our thoughts eh:)) :yikes: :-|
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Re: Neurology

Postby painprincess1 » Sat Oct 26, 2013 9:09 pm

Well Tal, ive have to say i dont no what id do without this place. i dont no anyone here who has tired to tell me whats right or wrong with me like a dr would ,more then anything its nice to no other ppl feel the same or hurt the same and can stop you thinking your going nuts alone.many many times as i lay in bed feeling in pain. i think to myself ....well i know a few ppl who are laying here awake just like me. and you no what it helps me no end. i do understand what your saying about ppl acting as drs but really with the monitors here its jumped on.because no one knows you better then your dr .were just really just trying to help each other alone.xxxx
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Re: Neurology

Postby *Lisa* » Sun Oct 27, 2013 10:30 am

Hi Tel..

Soon as you get a diagnoses of anxiety stamped on your notes then doctors dont tend to take you as serious as the next person i have found with my own experiences although there better with me now.

Anxiety in its self causes tension and pain and then panic because of the pain and not knowing why the pain is there etc...

The stiffness in the muscles can feel like your whole body is being crushed to death :shock: :shock: sometimes i cannot breathe / swollow etc... this sends panic signals then heightens the anxiety.

It took me many many years to understand my body then to control the mind to teach it that its fibro and nothing *serious* so to speak...

I had been through many traumatic times before hand and went though lots of therapy to be able to try and understand the goings on.

Distinguishing between fibro and something else is an art!! and i still get some things wrong :crazy: although loads better at working out is this fibro or something else :-? this is were fibro becomes dangerous. Were constantly told *its just fibro* but fibro mimicks so many other illnessses with its symtoms it sends you :crazy: :crazy: :crazy:

My GP got things wrong on a few occasions also. He was never thorough tho and plamed everything off. I found a GP who was *thorough* he listened and then examined me. This lead on to many others diagnoses that i thought was fibro/fobbed off as fibro so always good to seek a second opinion. Its your life and health not theres!

Then once you learn all about your body and whats what its trying to control it. WOrking out what meds/therapies help and what to do on a flare etc...

Its not easy!! its not just an illness its a full time job!! :roll:

Finding a doctor who will listen is the key, someone who wont judge you, blame anxiety. Someone who will take the time to listen and examine you and reassure you.

I was told also to never come on forums :lol: ooopsss.... :-P but if i wasnt to have done then i wouldnt have had all the support i needed and then to support others.
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Re: Neurology

Postby Tel1 » Sun Oct 27, 2013 5:22 pm

Hi Lisa

what you describe is how I get things.... the pains like you're being crushed to death and can't breathe...I have had that a few times and when it happens, you just think, this is it, I am on my way out....It would be great if we could have an electric monitor on
our heads which lets us know that each symptom and pain we get is just the Fibro:))) My GP diagnosed me in about 8 weeks of me seeing him, and then I went to a Rheumatologist after to 100% confirm... but now, what can they do, apart from looking at us in amazement at the continuous list of symptoms that we seem to have...I know about 3 people who have Fibro, but none of them get all that I have, you are the closest person to have had the same to me.... :needhug: :oops: :)))
Sometimes I think, am I a different person altogether to how I use to be, and that is depressing to me, but I keep fighting those thoughts that I still am just me:) I am 51 and everyone says I look 40 as I have no wrinkles yet!!:))) so Fibro hasn't got hold of me
face yet :-D long may it continue:))) I hate taking medication for this so called Fibro as I worry that it will affect my internal
organs etc....so I try not to take the medication all the time as otherwise if I did, ( and if the medication is suppose to work ) then
I would never know if I was having a bad patch or not..... be good take care, and lets work out this damn Fibro together and then
tell the world that there is cure.... but I doubt it eh,,I just don't want to be like this forever:)) :yikes:
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