results how can this be? Quix or anybody.

[uk2]

Hi ALL,

I've just had my neuro phone me to tell me my LP and MRI were all normal so he has said that he feels its a joint problem and has refered me to a joint specialist up at the hospital.

Its been 7 months of waiting for test results one after the other, i dont know if to be happy or sad and now i have to swap to somebody else and go through more tests.

I'm still on the same drugs i was on months ago and getting worse!!

How can this be, how can i be in so much pain and they not find anything, surely if it was a joint problem then it would show on the MRI? i know now it will be months of waiting to find out if this joint specilist can help.

Any advise?

I guess i should leave here now, its a shame as i have found alot of friends on here.

Samantha

[uk2]

All

What would i do without you all, you truely lift me up and make me feel so wanted.

Rena

I take example from you hun!! your amazingly strong and have brought so much to this forum, i will fight this untill i get an anwser, and with you lot behind me the doctors dont stand a chance LOL

Sally

Thank-you always for your kind words and advise, its hard in limbo land but i know you know that. we can be pro active together.

T-Lynn

You are a woman with fight and strength and have been through so much!! you carry on the good fight and give such good advise, it is about the right doctor at the right time and i will find him/her. I will kept my head held high and try to stay positive.

Quix

what we i and the forum do with out you hun, your amazing sweet strong lady, you too have been through so much in your life and even through your illness you carry on givng advise to us old timers and newbies without fail, you have my prayers,thoughts and admiration. I'm going to the docotor today to see if i can get my ears and sinus sorted hoping that might help with the balance issue and dizzyness and too get refered to a pain clinic to help control my pain better. I have so many friends on here now it would break my heart to leave so i will lurk and help when i can and keep you all posted on the next stage of my adventure LOL And i think ill pass on the bugs though my dogs and cats would like them!! what about your cats they would like them too!! maybe you could go into business selling them for the pet industry LOL

maggie

I'm tempeted to go leave just so your come and get me LOL id love to see you in real life.
Thanks for your support hun, lets hang int here together

wobbly

hang in there babes and be pro active with me!!


Thanks Guys i love you all xxxxx

[LLWB]

I agree, YOU CAN"T LEAVE! I to am still undergong LOTS of tests, they keep finding things wrong, LOL but this is the BEST forum I have found. I love the support everyone gives, MS diagnosis or not. Don't have many friends, can't afford to leave the ones I've found here. Don't you leave either, we would miss you to much....humm, a trip to England to drag you back doesn't sound too bad! ......Maggie

[Quixotic1]

Haven't you guys read the RULES???!

1) Loss of "Limbo Status" Does NOT Constitute Reason Nor Permission to Leave!

2) Recipients of Diagnoses are Expected to Remain on Forum Indefinitely to Provide Hope and Education for Those Still In Limbo!

3) Friends Don't Let Friends Leave!

Sam - I think Fibro is very much a possibilty for what at least part of what you are going through.  The pain of Fibro is underestimated by most people.  It can be excruciating, debilitating, disabling and all the other "lings"!!  And, yes, a rheumy is the right person to diagnose it.

Please press your doctor for some help in the control of your pain.  Chronic pain is very bad for all parts of the human.  It will destroy your emotional stability, it damages your immune strength and it robs you of the ability to enjoy your life.  What ever the cause, you need some help!  They have to stop passing this buck!

gentle ((HUGS)) and I'll also pass along some of Heather's ((BUGS)) she sent me.  We tried them dipped in chocolate and tried to pretend they were a Thai delicacy, but....you can have the rest, 'cuz I love you!

Quix

[T-lynn]

Ya know I need a vacation,ya don't want me to have to travel to bring ya back to your cyber family.You are an important part of us here and have much to offer to all of us here.

You keep fightening,you'll get your strength back,its just the right DR at the right time with the proper knowledge.

T

[Super_sally888]

Hi Sam,

yeah, I second everything from everyone here. Be proactive and keep working at it.

And, no you can't leave! You are still in limbo land so there is a place for you here!

Lots of us haven't been diagnosed.... me included.. :)  But I'm still hanging around.

S

[Wobbly]

that's was a great story, something that just made my day.  Thanks Rena and Samantha...

I will try to have that pro-active spirit and keep going too..

Stay in touch Samantha..ttys...

bye for now

Andrea

[Rena705]

YOU Samantha are on the RIGHT TRACK!  You are being pro-active and you will make it through this struggle with your boxing gloves on and your arms swinging...I truely believe it!  You have a positive personality that bubbles through your words and I have every faith in you that you will, like I said come out swinging!

Like I said before though, don't leave us, let us know how you are doing and don't forget that it works both ways...we need your support too!

Loves ya,

Rena

[uk2]

Thank you for your support you are truely wonderfull.

Rena that is an amazing story!! and gives people with no dx a hope of finding the right one. We too have pain clinics and that is what i'm going to ask my GP when i see her tomorrow and also if she can give me something to help this pain.

I have wondered if i have fibromyalgia which is very simular too MS and i guess the rheumy will be able to dx this for me.

I cant get the results from the consultant its not the way it works here i'm not private medical care as cant afford it so its alot of waiting and basic care!! but we are luckey we have this system but do pay for it out of our wages to the goverenment.

The neuros think they are God but there is only one God in my eyes, and i have faith that i will be led to the right consultant one day and i guess i just grow stronger sprirtly.

In the mean time i will carry onb with the exercises the OT gave me and save money to go back to my chrio and get some treatment, i will closer at my diet and focus on my friedns family and the coming holidays.

God Bless you all

Hugs and kisses

Samantha x

[Rena705]

Samantha...you cannot leave this site!  The point being that you HAVE made a lot of friends on here and your journey is not over yet!  

I was speaking to my dentist last night and he had a good point.  Sometimes doctors, be they neurologists, oncologists, urologists or whatever, just cannot find what is the norm that they would look for in the course of any disease.  The brain, unfortunately, is an organ that is especially difficult to understand and I think that we all know that it is a long time coming before doctors can understand completely how the brain works and why it works the way it does.

He recently had a patient in China that had been through the full battery of tests for MS and when the neurologist was done the patient was told that because he couldn't find anything "medically" wrong with him, there was no way that he had MS.  He suggested that the patient should consider counselling with a psychiatrist or psychologist to work out the emotional problems that must be causing him this "phantom" pain.

Well the patient was flabergasted by this but he decided to take the neurologists advice and went to see a psychiatrist.  After several appointments with the psychiatrist, the psychiatrist asked the patient if he would mind if he brought in another specialist at the next appointment.  The patient agreed and at the next appointment this "other" specialist began doing a neurological exam which, of course, the patient recognized for what it was.  When the specialist completed the exam he asked the psychiatrist if he could take on the care for the patient as he felt that he might be able to get the patient some relief and the psychiatrist agreed.  When this patient of my dentist's asked what this was all about the specialist introduced himself as a neurologist specializing in MS and he told this patient that he feels that he may have MS!!!  This MS neurologist proceeded to do the appropriate tests on the patient and the patient does have MS and is now on one of the MS meds and is doing fairly well.  The dentist told me that while he is walking with a walker and has some cognitive problems, he feels that he would be a lot worse off if he hadn't gone to the psychiatrist who in turn passed him on to the specialist he required.  This is a true story and my dentist swear's on his mother's grave that he is telling it as it happened.

I have to say that the story blew me away and I couldn't believe that this was the outcome and it had taken so long for this poor guy to get the help he needed.  The point is that he did get the help he needed.  He found a doctor that believed in the pain and other symptoms he was feeling and it was acted upon.  He kept on going until he received the care he needed.

Samantha...while you have not been diagnosed with MS and you may have a problem with your joints then you are being put in the hands of the appropriate people.  If it is not indeed a problem with your joints, perhaps a physician seeing it from a different angle with will give him/her a different perspective as to what the pain is all about.  A lot of the time, I find, we sort of treat our doctors like God's in that we expect them to know all and do all but unfortunately they are only humans as are we.  In my opinion, I would ask the neurologist who told you that your tests came back normal if there is anything that he can do to help you with the pain while you are waiting to see the doctor about your joints.  We have here what they call pain clinics and I know a friend of mine with diabetic neuropathy has found great results in working with them.  You may have something like that within your healthcare system and not be aware of it but your doctor may.

I wish you all the luck in the world in finding an answer to your pain and relief that you need.  I don't want to see you leave this site not only because you have not had a diagnosis but we enjoy having you here and you are a part of how the site works to help other people.  We also want to be here for you as you continue this excrutiating journey to find answers.  But please remember, you have to stay pro-active!  You have to continue to push for a diagnosis and you have to continue to dig for those answers yourself because it will not come to you on a shining platter (much as I would like it to for you!).

So Take Care Honey and know that we are behind you 100% and that you have not been given permission to leave our care!  So that's THAT!

Lots of Hugs,

Rena  

  

[Wobbly]

Sorry to hear your in for more waiting and testing.  I don't think you should leave this forum, you still have friends here and you are no dxs yet.  Yes, you may not have MS because the MRI and LP did not show reasons too.. but I have had two MRI and a LP..I'm Probable MS..my MRI showed a few lesions, but it said not specific of MS and my LP was neg.

I'm not leaving this forum because I have friends here that help me though the tough days and I don't know what I would do without them.  I thought I was leaving yesterday...but things change..

Hang in there and hope you keep in touch to let us know how your doing.. OK.

Andrea

[meikman]

I could be wrong but the way I understand it is that MRI's wont pick up fluids as well as a CAT Scan therefore CT are better at dx joint problems.

[sllowe]

Hi Sam,

Oh boy, I just don't get it.

I do think that if there were problems in that area, that an MRI would of picked it up, but it would depend on what the MRI was done on.  If it was the brain and spine, then I think something might of shown in the spine referencing joints and bones.  

Can you get copies of the reports from the LP and the MRI's?  I know it's different there, than here, but, if there is anyway to get your hands on those reports, I'd do it.  I'd have to read this myself, not that I know more than a Dr., just that they miss things, even when it is spelled out to them by a radiologist or lab tech, and then the interpretation they provide to you would be off.

Maybe they would give them to you, since it seems they are going to send you to a specialist.  The specialist I would hope, would be very interested in seeing those MRI's.

I'm sorry Sam, this news really stinks,

SL