blah... did an mri after 8 months

[licenseless]

Was given a confident maybe on Lymes for a couple of mmonths until after the antibiotics and nothing changed...

Doctors where worried but didn't know where to send me. Infectious disease at john Hopkins wanted nothing to do with me and up until a week ago when symptoms came back and some never went away... The idea of a neurologist was never mentioned...

So a week ago I went to one and he said... Oh wow I bet this is MS... Go get an MRI... So on 12/12/12 I went to get an MRI in hopes to get some direction.

I'm an R & D satcom tech ... Which means being confused isn't normal to me...

I really think its weird ... But I almost hope that it is MS for the shear fact that it would mean I am done being in limbo... I will be done freaking out.... And I will no longer be ... As my doctor put it... a facinating case... i dont want to be facinating... I want to be understood again... This way we atleast know how to treat it... And not told ... Well this might help ... If not take lots of these and i garauntee you will sleep at night again

Anyways... Advice... Help ... Input... Virtual hi fives... And just anything you can to keep me motivated until monday when my doct tells me the result of the MRI would be nice


Im dizzy exhaustd and in pain...

[JerryD]

You are preaching to the choir. I am not happy to greet you under these circumstances but you are in the right place. I will make a suggestion to help you get your head clearer.
You should get blood tests for vitamin D, vitamin B-12 and magnesium levels. Don't believe your doctor's assurances that your levels are ' OK' . Get the levels and research them on-line. Also, my hormone levels were all out of whack, 2 years ago. I have been using testosterone cream, and hydrocortisone (low doses ) daily. Having these hormones out of balance can cause one to feel really poorly. Good luck

[suziq38]

My gyn/oncologist, gastroenterologist, neurologist, and urologist all thought that I was somewhat of a hypochondriac.

That was until I had an MRI on all 3 areas (C-spine, T-spine and Lumbar) of my spine. It showed spinal stenosis on my upper spine region, and problems with my lumbar spine.

I kept talking about strange weaknesses in my inner thighs for about a year, then it graduated to myelopathies in my hands, fingers, feet and toes. This was numbness and tingling.

Thank God I went to several specialties until one of them figured out where the problem could be.

After listening to me intently, he asked me to repeat my symptoms and what I was feeling lately again.
I did and he said to tell my doctors (neuro and gyn) that the problem was in my UPPER spine.

When I went back to my neuro, he immediately did the CYA
school of medicine (because the got "called out" by the gastro) and finally ordered the MRI's that I needed.
Even he was amazed at what he was on the CD pictures and what he read in the radiologist's report.
Spinal Stenosis....could be M.S.

I felt sad but relieved and vindicated that of course, I always knew all along that something was very, very, wrong. Anger that these medical doctors with all of their advanced degrees chose to believe that I was a hypochondriac rather than telling the truth about my symptoms.

I finally got a phone call from my gyn apologizing because my future spine surgeon yelled at him for allowing my symptoms to progress and worsen, even after I wrote him a 5 page letter listing my symptoms and concerns, asking for help and direction as I was going to embark on a 3 week vacation to Europe.

I yelled and chastised the poor man for 2 hours and he probably deserved everything he got.

It is December and he holidays are approaching so I am ready to forgive them all as many of you have stated that this is really business as usual. There are so many conditions that mimic M.S. that the diagnosis is hard.

I am still not sure of my diagnosis as the appointment with my M. S. neuro is December 21.

My only regret is that I did not get my long term care insurance in place before I took all these M. R. I.'s.
I hope that I can still get insurance.
If not, I am going to get LT insurance in place at least for my husband.

Most likely I don't have M. S., (negative on the LP and brain MRI and other, numerous blood tests) but one never knows.

Hopefully, I will know soon.

Good Luck to all.

[licenseless]

I get frustrated reading the responses... But then I realize even in my profession... We study radio waves and there patterns plus satellite comms... And yet we run into problems all the time...

So I can't get mad when a doctor doesn't understand what's wrong with me... But I do anyways

Well I read a bunch of stuff on here and told my nuero to test for low testosterone... Sure enough its low... So now they are pushing for a c and t mri now... So that should show more

Cross your fingers we figure it out

And if any of you are in the Maryland area... Let's get a beer... You guys need cheering up to do... ASAP

[JerryD]

You now know you have low 'T'. What about vitamin D, B-12 and calcium/ magnesium/ potassium? These are extremely important to nerve function. All of these are easily treated. Good luck

[Whimpurr]

Just want to give you a virtual (((HUG))) ... I am in the extremely FRUSTRATED land of limbo myself! *sigh*

[licenseless]

You now know you have low 'T'. What about vitamin D, B-12 and calcium/ magnesium/ potassium? These are extremely important to nerve function. All of these are easily treated. Good luck

vitamin d is low and B-12 is low... well b-12 is at 292... which is on the low side but as i was told that 200 is low... but 200 to 400 is not accurate and can be a low reading... to confusing...
i have an appointment tomorrow... and a third MRI

you know what... i am at the point were i just want to scream at every doctor and every person that sees me... because i am tired of explaining my symptoms to everyone i meet 3 times in one appointment... i have been to the same places 3 or 4 times... "there is a file in your hands [exploitive] you tell me what my symptoms are!!!"

Limbo is a great name for this... its cruel and demeaning... i got told yesterday that these MRI's were for my brain and Thorasax (cant spell that word) not my lower back and that i needed to stop complaining about my back and my sides...

yeah... because i want to be going threw an MS "HUG" right now... yeah thats exactly what i want right now... to be going threw pain and letting this crazy lady who doesnt even understand why she is giving me an MRI tell me im complaining to much...

damnit... i am an intellegant man... i have worked my way from grunt to RandD technician with out any sort of degree in just a few years... i have proven my worth in life... just for it to turn to crap like this...

sorry guys... i just needed that... im sure i am being ridiculous... but right now i dont care anymore... i need a place to vent... and i am to exhausted to lift a tool and do what makes me happy now days... and i dont even have the care to pick up a camera and get back into my part time profession... i used to love doing that by the way...

i have to say this...

i would wish this on one... and i really am sorry to have to see so many members in this forum... its not fair to any of you... and i really really wish for the best to all of you... i am a guy who normally carries everyone around him and keeps everyone up beat... but right now... i just want everyone to go away...

im sure... tomorrow will be different... but today blows hahahahaha
i just laughed at that ... so i guess i will be fine...

SORRY FOR THE RANT

[swingingwillow]

vitamin d is low and B-12 is low... well b-12 is at 292... which is on the low side but as i was told that 200 is low... but 200 to 400 is not accurate and can be a low reading... to confusing...
i have an appointment tomorrow... and a third MRI

you know what... i am at the point were i just want to scream at every doctor and every person that sees me... because i am tired of explaining my symptoms to everyone i meet 3 times in one appointment... i have been to the same places 3 or 4 times... "there is a file in your hands [exploitive] you tell me what my symptoms are!!!"

Limbo is a great name for this... its cruel and demeaning... i got told yesterday that these MRI's were for my brain and Thorasax (cant spell that word) not my lower back and that i needed to stop complaining about my back and my sides...

yeah... because i want to be going threw an MS "HUG" right now... yeah thats exactly what i want right now... to be going threw pain and letting this crazy lady who doesnt even understand why she is giving me an MRI tell me im complaining to much...

damnit... i am an intellegant man... i have worked my way from grunt to RandD technician with out any sort of degree in just a few years... i have proven my worth in life... just for it to turn to crap like this...

sorry guys... i just needed that... im sure i am being ridiculous... but right now i dont care anymore... i need a place to vent... and i am to exhausted to lift a tool and do what makes me happy now days... and i dont even have the care to pick up a camera and get back into my part time profession... i used to love doing that by the way...

i have to say this...

i would wish this on one... and i really am sorry to have to see so many members in this forum... its not fair to any of you... and i really really wish for the best to all of you... i am a guy who normally carries everyone around him and keeps everyone up beat... but right now... i just want everyone to go away...

im sure... tomorrow will be different... but today blows hahahahaha
i just laughed at that ... so i guess i will be fine...

SORRY FOR THE RANT

Hi,

I recognize and can relate to your feelings. We're here for one another so you don't need to pick us up today - how about you let us help you for today?

I am in limbo too. I have been seeing doctors and neuros for almost nine years now, although my symptoms are years older than that.

My symptoms have pretty much been invisible to neurologists. Most of my tests are fine and by the time I get an appointment I am symptom free. I have had to put up with it's all in your head comments so many times.

Finally I am getting doctors to hear me.

I encourage you to continue to advocate for yourself.

A couple of things are really helping me right now. My husband is coming to as many appointments that I have and is helping me advocate for my health. I have always spoken up for myself but it is helping give me credibility by having someone with me.

Doctors are starting to see my signs and symptoms. So what was invisible before is now being seen. I saw an opthamologist yesterday and he said that my eyes look great, however, if my symptoms continue for months or I continue to get migraines for months then I need to go back to emerg as it seems to be indicative of MS.

The opthamologist read a report from emerg about my migraine and about me seeing a neuro soon and I'm sure that my neuro tests that showed poor gait and problems related to my legs were documented in emerg.

I kept telling the eye doctor that my neuro is probably not going to have time as he's supposed to look at my gait but the eye doctor repeated himself that I needed to tell him about my migraines. So this time I learned to listen and will do as he tells me.

I took a note so that I don't forget.

When he said that my husband and I asked him to please put his comments into writing and send it to my GP as that gives me one more doctor who is saying look there is something wrong with this woman and you need to look at her.

It doesn't mean I will get a dx of MS but it will continue to be looked at and if it is something else then they have to figure out what to do with me next instead of just saying it's in my head.

Keep repeating yourself about your symptoms and ignore the health care providers who make rude comments.

If you find that the comments are very rude and if you're comfortable tell them in a calm voice that it is not necessary for them to take that tone with you as you are not complaining, instead you are reporting a symptom that you have. Sometimes you have to remind them to be polite. But then you have to be comfortable with that.

If you find yourself getting too down about all of this, do you have a GP that you trust that you can talk to about your frustrations? I do, and I find it really helps.

Virtual hugs!!!

[licenseless]

Virtual hugs are way better than ms hugs... Those things suck hahahaha... Probably not going to sleep tonight... And I got my third mri in the morning followed by my GP appointment... I agree that you must find a GP you like... This is my second... Unfortunately I am changing jobs and insurances... So I might have to change again... But either way... Thank you for the kind words... I needed that

I also got something I really needed today too
This lady working at the eye doctor when I went to get my contacts prescription renewed was asking me why I was moving so slow... I ask are you sure you want to know... She said ofcourse cause you look like you need help...
So i gave her a brief run down and she told me that her daughter is dealing with it and that she does ms walks every year and then she shook my hand and said thank you to me... :.) Made my damn day... Sherri ... I believe her name was... Very nice lady.

So thank you guys again ... I think I'm going to be ok... Just need less ms hugs and more real hugs hahahahaha

[JerryD]

licenseless,
Are you telling me that when I posted, your doctors knew you were low on those readings but didn't consider those vitamin deficiencies and hormonal imbalances a PROBLEM ?
I would be screaming and yelling like I was in a fire in a movie theater !
I don't know what is wrong with doctors who don't check the simple things first. You're probably aware of 'trouble shooting'. You don't overlook the simplest stuff, you start with them. You know... 'is it plugged in' ? Did you confirm that the outlet has power ? You know the KISS principle, right. Good luck

[licenseless]

licenseless,
Are you telling me that when I posted, your doctors knew you were low on those readings but didn't consider those vitamin deficiencies and hormonal imbalances a PROBLEM ?
I would be screaming and yelling like I was in a fire in a movie theater !
I don't know what is wrong with doctors who don't check the simple things first. You're probably aware of 'trouble shooting'. You don't overlook the simplest stuff, you start with them. You know... 'is it plugged in' ? Did you confirm that the outlet has power ? You know the KISS principle, right. Good luck

Actually... To make it worse I had to ask them to check for the low t and b- 12

They weren't even going too... So thank you... Trust me... I'm frustrated... But I start testosterone shots tomorrowso that should help... Right?

My GP told me to wait for the mri results before I change nueros... Because if he signs off on ms... Then get a second opinion... I trust her opinion... So I'm going to wait... She also doesn't like how this guy works... But she said she thanks he is wanting to slowly get me to accept the idea of it with out over welming me... But I rather know now and start getting some treatment... Instead of worring about it for weeks or months

[licenseless]

well... anyone got any idea what this means...

First off im out of town so i didnt get the phone call...(MRI results) but my wife did... she was confused and a little upset because they used the word degenerative disease... so she doesnt realy know what was said... but i am curious if you guys have heard of anything like that

she wrote down what she could... but what she wrote down made no since... "degenerative disease due to normal ware" then she wrote down "no pinching no narrowing" i know that means the vertabrae are fine... but i am confused

im waiting for the doc to get a chance over the next few days to call me down here in florida or i have to wait for another week or so for when i get back to maryland.

[Seasha]

If you had a MRI of the spine, it could possibly mean (and showed) "degenerative disk disease" (DDD) which is not considered a disease. I have this condition along with a host of other people and it's somewhat normal with the aging process. That could explain the note about "DDD due to normal wear".

Here is a link from WebMD that explains it - http://www.webmd.com/back-pain/tc/de...topic-overview

I would try to relax until you can talk to your doctor.
Take care!

[licenseless]

If you had a MRI of the spine, it could possibly mean (and showed) "degenerative disk disease" (DDD) which is not considered a disease. I have this condition along with a host of other people and it's somewhat normal with the aging process. That could explain the note about "DDD due to normal wear".

Here is a link from WebMD that explains it - http://www.webmd.com/back-pain/tc/de...topic-overview

I would try to relax until you can talk to your doctor.
Take care!

well... i got a call from the doctor because they want to setup a spinal tap... so i used the opportunity to get clarification

she said there is normal ware and tear on the spine from obvious years of military service and just being 30 years old... they said there might be a problem later on in life with my a few vertabrae... but as of right now its not an issue... they just wanted to bring that up...

but the doctor believes i have some sort of degenerative disease because i have had decline since my last episode... she still thinks its just early stages of MS

so it was just big words freaking my wife out... but the doc did give me good news... there are no visible plaques or lessions as of right now... there is bad news... i have to have a spinal tap next... bleh

i had one when they thought it was lymes disease... that sucked... for a week... but some of it might have also been the girdle band sensation giving me back problems...

so we are going to try and schedule that as soon as possible...

my fear now... after all of this... is that they dont find anything in the spinal tap either...

because i am at the point where it feels like there is nothing left to test... this limbo thing... SUCKS...

the idea of not knowing... makes me more frustrated than getting the news that i have it... i mean who realy wants to be told " sorry we dont know what life sucks for you"

i must say... out of all things... i wish this on no one... and for any of you here... ANY OF YOU... who have been diagnosed or are waiting too... i am sorry life threw you this curve ball... from me to you... I am sorry this is happening to you.

just like most of you... i got a kid a spouse of 10 years and my dream job... life was looking like it was about to be bad ... and then this happened

phew... im off my soap box.. (stupid mood swings)



on a good note


i went and played basketball for about 30 minutes... felt great to make a few shots... no matter how much it hurt... it almots feels like i can accomplish anything if i got this monkey on my back and i can still be normal...

you guys take care... and thank you again for all your support... everyone of you is a great person!!!

[JerryD]

I am sure you will feel a positive difference after you get some testosterone. Do you know about the testosterone cream 'Andro gel' ?
You probably should talk to your doctor about vitamin D supplements. They will tell you that a low 'safe' range is 25-30ng/mL. Don't believe it. The 'safe ' number should be near 50-60ng/mL. You will definitely feel a difference if you get these numbers up. I take 7000iu's daily. I buy them from the Vitamin Shoppe. Good luck