Aa
Thats it NO MORE TESTS === E.V.E.R.
Well thats it now no more tests for me I am retiring from the medical merry go round. IF my MRI is clear thats it anyway.
I went for my MRI on Saturday was in there for 45 minutes and it has taken until today for me to feel a bit better, ended up with terrible neck ache where I was scrunched in the machine with a neck brace.
Had my LUPUS blood tests this morning the nurse didnt even know how to take them good innit. Shows how rare that test is LOL.
So now that is it.
I mean it LOL ===honestly.
I feel a huge relief to be honest perhaps I will never know what is wrong with me maybe it is better I dont know as at least I have hope of recovery.
Hope you are all well peeps. Me I am just wiped out but hopefully will be back on form in a few more days. Its amazing how these tests just take it out of us isnt it.
Take care all of you. Big hugs. Mariaxxxx
I went for my MRI on Saturday was in there for 45 minutes and it has taken until today for me to feel a bit better, ended up with terrible neck ache where I was scrunched in the machine with a neck brace.
Had my LUPUS blood tests this morning the nurse didnt even know how to take them good innit. Shows how rare that test is LOL.
So now that is it.
I mean it LOL ===honestly.
I feel a huge relief to be honest perhaps I will never know what is wrong with me maybe it is better I dont know as at least I have hope of recovery.
Hope you are all well peeps. Me I am just wiped out but hopefully will be back on form in a few more days. Its amazing how these tests just take it out of us isnt it.
Take care all of you. Big hugs. Mariaxxxx
There are times when we just have to stop going to the doctors and take a breath. It probably happens to all of us at some point. If this is the end of the testing for you, I hope you do find some way to feel better. Enough is enough.
I was told I was going to have minor heart surgery earlier this month, but when I met with the cardio who was to do the surgery, he decided what was happening to me was neurological or caused by medication?????? and the surgery wouldn't work. Honestly, with his smug little attitude I could have slapped him. If the surgery was not the right thing, great, but don't treat me like I am wasting your time.
Why don't doctors understand that we have LIVES to LIVE and that we are PAYING them to HELP us?????? Why do so many have nasty attitudes???? We are not ping pong balls in their little game.
Anyway, I am seeing a doctor who is being very helpful, so until I see the NEXT neurologist I am able to stay on my feet and continue working. There are good ones out there, but my God, there are too many who are uncaring and rude...just look at all the people here who report this type of treatment.
And by the way, the medication the cardio pointed to as a potential problem was immediately nixed by my rheumy and I was told to CONTINUE taking it. Ping...pong...
But Maria, I hope you are doing well. You are a special and dear person.
Be well,
Wanna :o)
I was told I was going to have minor heart surgery earlier this month, but when I met with the cardio who was to do the surgery, he decided what was happening to me was neurological or caused by medication?????? and the surgery wouldn't work. Honestly, with his smug little attitude I could have slapped him. If the surgery was not the right thing, great, but don't treat me like I am wasting your time.
Why don't doctors understand that we have LIVES to LIVE and that we are PAYING them to HELP us?????? Why do so many have nasty attitudes???? We are not ping pong balls in their little game.
Anyway, I am seeing a doctor who is being very helpful, so until I see the NEXT neurologist I am able to stay on my feet and continue working. There are good ones out there, but my God, there are too many who are uncaring and rude...just look at all the people here who report this type of treatment.
And by the way, the medication the cardio pointed to as a potential problem was immediately nixed by my rheumy and I was told to CONTINUE taking it. Ping...pong...
But Maria, I hope you are doing well. You are a special and dear person.
Be well,
Wanna :o)
You are welcome sweety! I know a lot of us feel the way I do. Some days that is the only thing that keeps me sane. I do not want anyone else to go through this but i know there are plenty of people like us and it is comforting knowing that i do not do it alone! Hugs for all!
I don't blame you. I've been on the edge of stopping the fruitless neuro trail since my last incompetent neuro. I just opened the mail and read my report of that visit. I'm seeing red!!! In the report it is evident that she was not listening at all to what my husband and I were telling her. 50% of the report is wrong!!!! GRRRRRRRRRRR
I am going to write to her and also include an answer to her incorrect statement that people over 60 do not get relapsing remitting ms-they only get progressive. I found a study of people diagnosed over 60 that clearly states that some of them had relapsing remitting ms. She was supposed to be an MS expert? Good Grief....
I pray a lot for all of us. There just has to be a way to find someone to help us. The Mri's and spinal taps can be clear with MS. There are docs who do believe this. Where are they? I'm asking the universe for an answer and I expect to get one now and not in the next life time.
Maria if you find alternative treatment that works for you will you please share it? I would be more than happy to try just about anything.
Steaming off for all of us. Charley
I am going to write to her and also include an answer to her incorrect statement that people over 60 do not get relapsing remitting ms-they only get progressive. I found a study of people diagnosed over 60 that clearly states that some of them had relapsing remitting ms. She was supposed to be an MS expert? Good Grief....
I pray a lot for all of us. There just has to be a way to find someone to help us. The Mri's and spinal taps can be clear with MS. There are docs who do believe this. Where are they? I'm asking the universe for an answer and I expect to get one now and not in the next life time.
Maria if you find alternative treatment that works for you will you please share it? I would be more than happy to try just about anything.
Steaming off for all of us. Charley
Dawn - thank you, you said exactly what I feel.
samxx
samxx
Maria,
I know your frustrations with doctors, even though, I have only been going through my issues for shortly under 1 year. My only reason for continuing on for my answer is so that these doctors that think that they know everything will know that they were WRONG with me. If we all wave the white flag then these doctors will think that we are just as they predicted...NUTS! I know and you know that there are real medical problems plaguing us. It is not acceptable for us to "just live" with these symptoms. We are humans and deserving of at least an answer. I don't know about you but I do not want to die from something and not know what. I want to know, if for no other reason, to help the next person in my shoes. I sometimes get frustrated and have left many doctors offices in tears. As bad as it sounds I want the doctors to find something. I used to say Please Lord let the doctors find nothing. Now i say Please Lord guide these morons to the problem so that I may live a normal or close to normal life. We have our days and believe me I have had my fair share of days where i felt that i just wanted to say screw it and toss in the old towel. I too think that our families pacify us and not truly believe us. It is hard for someone to believe that we can be sick and not "look" or "act" as sick as we feel. My husbands true feelings came out the other night and it was truly heartbreaking. Of all people, I think he should know me by now. We have been married for 11 years this month. I have always been very driven and active. Last year I gave up everything I so loved because I could no longer physically do it. Hang in there sweety. I pray for all of us here. For each of us to receive some answer to this madness. Hugs and love from Kentucky!
Dawn
I know your frustrations with doctors, even though, I have only been going through my issues for shortly under 1 year. My only reason for continuing on for my answer is so that these doctors that think that they know everything will know that they were WRONG with me. If we all wave the white flag then these doctors will think that we are just as they predicted...NUTS! I know and you know that there are real medical problems plaguing us. It is not acceptable for us to "just live" with these symptoms. We are humans and deserving of at least an answer. I don't know about you but I do not want to die from something and not know what. I want to know, if for no other reason, to help the next person in my shoes. I sometimes get frustrated and have left many doctors offices in tears. As bad as it sounds I want the doctors to find something. I used to say Please Lord let the doctors find nothing. Now i say Please Lord guide these morons to the problem so that I may live a normal or close to normal life. We have our days and believe me I have had my fair share of days where i felt that i just wanted to say screw it and toss in the old towel. I too think that our families pacify us and not truly believe us. It is hard for someone to believe that we can be sick and not "look" or "act" as sick as we feel. My husbands true feelings came out the other night and it was truly heartbreaking. Of all people, I think he should know me by now. We have been married for 11 years this month. I have always been very driven and active. Last year I gave up everything I so loved because I could no longer physically do it. Hang in there sweety. I pray for all of us here. For each of us to receive some answer to this madness. Hugs and love from Kentucky!
Dawn
Hi Marie
Well I have heard you say this before but something tells me you mean it this time. Coping with all these weird things is bad enough without constant tests & hospital trips.
As you know I started out on the route to Limboland 16 years ago, the nearest I have to a label is “an undiagnosed neurological condition”! ( If I had been told there was nothing wrong with me, I may feel differently) I am 57 this year & feel that the older I get the easier it gets, just think in another 16 years, I will be in the “elderly” bracket, so no one will expect me to be able to rush around & function at top speed! I saw someone yesterday that is my age struggling down the street & thought “she’s slower than me”, just because she’s very over weight, so you see one day we will be even again.
Hugs to you, make the best of what you have, & thanks for keeping this great group going.
Love
M
Well I have heard you say this before but something tells me you mean it this time. Coping with all these weird things is bad enough without constant tests & hospital trips.
As you know I started out on the route to Limboland 16 years ago, the nearest I have to a label is “an undiagnosed neurological condition”! ( If I had been told there was nothing wrong with me, I may feel differently) I am 57 this year & feel that the older I get the easier it gets, just think in another 16 years, I will be in the “elderly” bracket, so no one will expect me to be able to rush around & function at top speed! I saw someone yesterday that is my age struggling down the street & thought “she’s slower than me”, just because she’s very over weight, so you see one day we will be even again.
Hugs to you, make the best of what you have, & thanks for keeping this great group going.
Love
M
Hi AA
You've had a very long time at the 'front' haven't you? Poor you....it really mucks up your life, doesn't it?
Waiting 10 months for a test? Good grief. It's quite gobsmacking. I thought it was just me they had it in for.
After I posted my reponse to Maria earlier, I got to thinking...we hear this very same history of waiting and refusals to test/scan etc from so many people. Then when they do test/scan eventually, something unpleasant is found that urgently needs treating.
I wondered if you (or any of our buds here) have any ideas why this is? I'm quite flummoxed by it all. I mean, so many patients seem to have this sort of experience...why...?
And I'm sorry to hear about your M-I-L. It doesn't sound good.
bestest
samxx
You've had a very long time at the 'front' haven't you? Poor you....it really mucks up your life, doesn't it?
Waiting 10 months for a test? Good grief. It's quite gobsmacking. I thought it was just me they had it in for.
After I posted my reponse to Maria earlier, I got to thinking...we hear this very same history of waiting and refusals to test/scan etc from so many people. Then when they do test/scan eventually, something unpleasant is found that urgently needs treating.
I wondered if you (or any of our buds here) have any ideas why this is? I'm quite flummoxed by it all. I mean, so many patients seem to have this sort of experience...why...?
And I'm sorry to hear about your M-I-L. It doesn't sound good.
bestest
samxx
Maria, I've not been around much lately. Never give up looking for answers, just take a break, refresh and get up and fight again.
After 7 years of ME, MS, not MS, MS, not MS I took a break for three years. My new neuro of 2 years isn't helping much. I've now been waiting 10 months for a test.
I'm going to be in fighting mode when I see her in April. The NHS has worried me for a while but we've just had some shocking news about my mother in law. This really is the final straw.
Don't let them grind you down
xxx
After 7 years of ME, MS, not MS, MS, not MS I took a break for three years. My new neuro of 2 years isn't helping much. I've now been waiting 10 months for a test.
I'm going to be in fighting mode when I see her in April. The NHS has worried me for a while but we've just had some shocking news about my mother in law. This really is the final straw.
Don't let them grind you down
xxx
Hi Maria
I completely understand that sense that your family are just placating you. It's a most horrid feeling. I've had that from family and freinds for 5 1/2 years until the plain xray actually showed 'ABNORMAL' , 'significant degeneration' etc etc.
Now they are - at very long and painful last - some of them are beginning to sit up and take me seriously.
But there's been so much damage done with those faintly dismissive attitudes.
My real point here though is that there IS a mechanical (or bio-chemical) physical reason for your illness.
It's just that the doctors have not yet done the right tests.
For 5 years I kept asking doctors to look at my neck and to scan it. 'No, no, it's not that. We've done all the tests you need. You're just a nutter hysterical hypochondriac...'
...and then, almost by a fluke, I managed to get a bog standard, very simple, 5minute, cheap xray. Because, for once, a GP actually extended herself to REALLY listen for just 10 minutes instead of just going along with the opinions of her arrogant, careless colleagues.
That's all it took: 10 minutes of openminded listening and literally 5 minutes of a 'quick and dirty' simple xray.
I'm betting that there are many tests and scans you haven't had - probably because you've already been relegated to the 'nutty-woman' bin.
It takes all, every single ounce of your strength and self-esteem to keep on asking for the right attention once the docs have started down their dismissive road.
Once you're in this trap of their making, you need to take time off sometimes - a break from the sheer relentless onslaught on your psychological integrity as well as from the patent neglect.
I can't believe that other human beings can be so doggedly reluctant to listen to anything but their own superficial judgements. But they are. Sometimes you just need to walk away from them for a while - and perhaps come back refreshed.
Whatever, I know there are real, conclusive answers for you and all of us.
hugs+++
samxx
I completely understand that sense that your family are just placating you. It's a most horrid feeling. I've had that from family and freinds for 5 1/2 years until the plain xray actually showed 'ABNORMAL' , 'significant degeneration' etc etc.
Now they are - at very long and painful last - some of them are beginning to sit up and take me seriously.
But there's been so much damage done with those faintly dismissive attitudes.
My real point here though is that there IS a mechanical (or bio-chemical) physical reason for your illness.
It's just that the doctors have not yet done the right tests.
For 5 years I kept asking doctors to look at my neck and to scan it. 'No, no, it's not that. We've done all the tests you need. You're just a nutter hysterical hypochondriac...'
...and then, almost by a fluke, I managed to get a bog standard, very simple, 5minute, cheap xray. Because, for once, a GP actually extended herself to REALLY listen for just 10 minutes instead of just going along with the opinions of her arrogant, careless colleagues.
That's all it took: 10 minutes of openminded listening and literally 5 minutes of a 'quick and dirty' simple xray.
I'm betting that there are many tests and scans you haven't had - probably because you've already been relegated to the 'nutty-woman' bin.
It takes all, every single ounce of your strength and self-esteem to keep on asking for the right attention once the docs have started down their dismissive road.
Once you're in this trap of their making, you need to take time off sometimes - a break from the sheer relentless onslaught on your psychological integrity as well as from the patent neglect.
I can't believe that other human beings can be so doggedly reluctant to listen to anything but their own superficial judgements. But they are. Sometimes you just need to walk away from them for a while - and perhaps come back refreshed.
Whatever, I know there are real, conclusive answers for you and all of us.
hugs+++
samxx
Hi,
I'm so sorry your down about more tests!?..I wish there were a answer..maybe the results of these tests will bring something for you? no? have you gotten the results?
I want you to better...I want even one to be better.....If only I could find my magik wand. ;o)
JibJen
I'm so sorry your down about more tests!?..I wish there were a answer..maybe the results of these tests will bring something for you? no? have you gotten the results?
I want you to better...I want even one to be better.....If only I could find my magik wand. ;o)
JibJen
Hi sam I just get so fed up of stuff being on the tests but told its INCONCLUSIVE.
I always feel as though I will now get the last bit of the puzzle but it just cant be found.
Or it is there but the neuro just doesnt want to finish the jig saw for some reason.
Its just soul destroying thinking you are going to get there but you end up slipping backwards again.
Anyway even if they gave me a label it wouldnt change anything in the great scheme of things it will just make people take me more seriously.
I just feel that my family are just pacifying me but not really believing me. IF that makes sense.
Sometimes enough is just well enough.
I always feel as though I will now get the last bit of the puzzle but it just cant be found.
Or it is there but the neuro just doesnt want to finish the jig saw for some reason.
Its just soul destroying thinking you are going to get there but you end up slipping backwards again.
Anyway even if they gave me a label it wouldnt change anything in the great scheme of things it will just make people take me more seriously.
I just feel that my family are just pacifying me but not really believing me. IF that makes sense.
Sometimes enough is just well enough.
Hi Maria
I must admire your courage - it takes a lot to let go of the search for certainty and accept the fact that you may never know. I take my hat off to you.
Yes, it seems to take more and more of our precious resources to carry on with tests and speculative explorations. Each time you go to see one of these doctors or get a test there's a bigger and bigger build up and so the let down is greater successively.
For myself though, despite what some dork neuros would like to think about my psychology,I've always thought very logically that there must be a palpable, mechanical genesis for my sx - because they are so reproducible at will. Where wonky engineering is involved there must be a commensurate engineering fix...let's find it , guys!!
How difficult do you suppose that could be!! And would I let these guys near a box of spanners...?! LOL
But it's interesting that your MRI resulted in such bad neck ache. Obviously I hope they find nothing wrong, though it would be great to be able to pinpoint the source of the problems at last....it'll probably happen like that: stumbling on the cause whilst searching for something else...
hope you feel much better soon, M
hugs
sammyxx
I must admire your courage - it takes a lot to let go of the search for certainty and accept the fact that you may never know. I take my hat off to you.
Yes, it seems to take more and more of our precious resources to carry on with tests and speculative explorations. Each time you go to see one of these doctors or get a test there's a bigger and bigger build up and so the let down is greater successively.
For myself though, despite what some dork neuros would like to think about my psychology,I've always thought very logically that there must be a palpable, mechanical genesis for my sx - because they are so reproducible at will. Where wonky engineering is involved there must be a commensurate engineering fix...let's find it , guys!!
How difficult do you suppose that could be!! And would I let these guys near a box of spanners...?! LOL
But it's interesting that your MRI resulted in such bad neck ache. Obviously I hope they find nothing wrong, though it would be great to be able to pinpoint the source of the problems at last....it'll probably happen like that: stumbling on the cause whilst searching for something else...
hope you feel much better soon, M
hugs
sammyxx
maria,
i can understand how you can feel as though you've reached the end of the line with your testing at this point. i am scheduling my 7th MRI for next week and am so weary of all the poking and prodding and being put in tubes, etc. if i didn't feel as if i were actually going to go blind or even die sometimes, i think i would shelve it all and try to accept the state of this as "the new normal."
blessings to you,
xo
binx
i can understand how you can feel as though you've reached the end of the line with your testing at this point. i am scheduling my 7th MRI for next week and am so weary of all the poking and prodding and being put in tubes, etc. if i didn't feel as if i were actually going to go blind or even die sometimes, i think i would shelve it all and try to accept the state of this as "the new normal."
blessings to you,
xo
binx
I hear you, enough is enough! (for now)
You've been at this merry-go-round a lot longer than me, so I haven't reached the level of frustration you're at yet. (1 year for me, I believe over 3 1/2 years for you?)
I hope you feel better today.
Take care Mike
You've been at this merry-go-round a lot longer than me, so I haven't reached the level of frustration you're at yet. (1 year for me, I believe over 3 1/2 years for you?)
I hope you feel better today.
Take care Mike
Mamabear,
Well atleast you got all that $hit out of the way....I feel like a human pin cushion at times from all the blood that has been taken from me..lol
Thats how I feel about my LP.Thats it ! Thats the last peice of my DX puzzel. I am so happy I got it out of the way...
Please take Care XXXX Theresa
Well atleast you got all that $hit out of the way....I feel like a human pin cushion at times from all the blood that has been taken from me..lol
Thats how I feel about my LP.Thats it ! Thats the last peice of my DX puzzel. I am so happy I got it out of the way...
Please take Care XXXX Theresa
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