PCP's nurse just called spine MRI normal...aaaahhh

[itsallinmyhead1969]

I just dont get it. I can barely freakin walk. I can't sit still for long. I can't lay in one position for more than a few minutes.  I have to rotate like a stinking shiskabob.  I can't go shopping without leaning on something.  I have gone back to my cane for support.  How the heck is everything NORMAL?  I just don't understand.  I am sure he is quite smug with himself now.  Now I'm wondering about the brain MRI they did at the same time.  It will probably come up fine too.  Is it all in my head like the doctor said?  I am in so much pain, I could just die.  I just can't explain the awful torment this is. yesterday i was ready to go to the hospital over it and stay there till they figured the problem out because the pain was so terribly bad.  I needed to vent. want to cry...heck am crying....i just dont get how such incredible pain can show a normal mri and 2 yrs ago a doctor said i had bone spurs and arthritis there. i guess they miraculously disapeared along with my cognition memory and everything else i used to have.

[Fluffysmom]

Hi there, fellow limbolander here!

You may need to point out the federal law we've had for several years, with the acronym HIPAA, Health Information Portability and Accountability Act of 1996.  You have a right to your records!  Different states have different caps on how much can be charged for records; luckily I've been charged very little so far for my records, and I have a WHOLE lot of them.

Ask for a release of information form, fill it out with you as the person to give or send the records to, and put in "personal medical records" as reason for release of the records, and specify which records you want.

I feel for you, with all that pain!  I have bad issues with my lumbar spine.  Several MRIs showed a disk bulge and disk degeneration, facet arthritis, but really didn't show a cause for the extent of my pain.  Bad neuro #2 said that she thought it was all in my head.  I had a discography done (very painful, wouldn't recommend it unless a doctor thought it would really answer some of your questions), which showed that I have several large annular tears throughout my lumbar spine.

The dye the injected leaked back out, meaning that the irritating biochemical from the center of the disk is also leaking out and irritating my nerves WAY more than the small amount of foraminal nerve compression that showed on MRI.  Just one example of a cause of pain that doesn't show up in MRI.

That being said, you're right, bone spurs don't disappear, as far as I know!  Also, normal is a relative term, ha ha.

I'm finding that you can have several things going on at once; I was diagnosed with fibromyalgia, mostly because the causes of my pain couldn't be found, and my sister was diagnosed.  Fibromyalgia is a very real and very painful and debilitating disease, but I never quite felt that it fit ME.  Through persistence, I've discovered many causes of my pain, such as an old compression fracture of T-7, and other stuff I won't go into.

After you cry yourself out, eat your favorite comfort food and dessert, and possibly watch a movie that makes you laugh really hard, go about getting your records.  Maybe google HIPAA for your state, so you know your rights clearly.  

Your report might say more than your PCP's nurse did, or your neurologist might notice something that wasn't noted.  

Your records are somewhere, they may be stored off-site, but they are required to keep them pretty much forever.  Request specific dates.  They probably don't want to pay someone to go dig them out from where they're stored, but they are required under HIPAA to get them for you; actually they were required by law long before HIPAA came along to keep your records.

I wish you relief from pain and agonizing, and wish you luck in retrieving your records, and hope that your neurologist can put all the puzzle pieces together and give you some clear answers and a plan of action and pain reduction.

Kathy

[itsallinmyhead1969]

i havent gotten the results yet from the mri of the brain or the evoked potentials testing. i was dx'd with fibromyalgia about 3 yrs ago...the part that is bothering me is tht 2 yrs ago a doc said i had bone spurs and arthritis in my back and im trying to figure out how they miraculously disappeared, but the symptoms didnt..lol. that and the ct scan that showed degeneration of my spine in january. i think like many of you had to deal with that the radiologist or the doctor didnt go into the things that were evident on that scan. i am just sick of this pain and of being ignored. since i have to deal with the Veterans Administration, it is like pulling teeth to get any records from them.  they act like it is non of my business.  the records that i do actually have are very few.  i requested all of my medical records and got a handful.  i have been going to them for almost 4 years.  somewhere in a box is a stack almost an inch thick (and it was from 2 yrs ago), but the records i received the other da y is about 1/4 an inch thick.(it should include the whole 4 yrs) when i requested the records they said they only keep them for a year now. i started freaking because i have been diagnosed with so many things prior to the year before. so much happened before last year. and indeed, when i got the records, they don't go back prior to last year.!!!can you believe it? oh well, what can you do?

[doni54]

Well, I just got a similar report from my brain MRI.  I could have written your post, I identified so well with everything you said.

These are some of the things I thought after reading the report. I wonder why if nothing is wrong and the brain is clear, why do my eyes coat over where I can't see? why do they jump around like mexican jumping beans? why do I see the little mouse running across the floor? why do I see spill spots on the floor when they're not there? why does it feel like bugs are crawling on my face and head? why can't I think? why don't I have a memory? why can't I talk? why, why, why?

I guess all of us in limboland just have to prop each other up and hang tough together.  I agree with Richard about the diagnostic problems.  I know when I got the report on my MRI on Tuesday, I was shocked and wanted to just curl up in a corner and disappear, which I did for most of the rest of the day.

All my friends here jumped to the rescue, as usual, and kicked me back into fighting mode.  We are all going to find out what is causing our symptoms, we just have to stay strong and most important, we all have to stick together and help each other through the tough times.  

Thank God for this forum and all the people here, it is a shelter in the storm.  We're all here for you and will fight the fight with you, so don't ever feel that you are alone in this.

Praying for you to get a dx soon.

Hugs
doni

[Amyloo]

Hi,  Thought I'd add my opinion too.  First, have you actually seen your MRI report for yourself?  If not get a copy asap.  I had a neuro (second dr. reading second MRI) that looked me right in the eye and said "normal".  I said "oh, thats great.  May I see the report?"  He hesitated and said, "Well, sure, but there is something in there that I don't agree with."  (Sorry to all members who have alread heard this.)

Want to know what he "didn't agree with"?  The report states: "Lesions from prior MRI ten months ago have increased in size and number.  This is consistant with Multiple Sclerosis in the proper clinical setting".  Two months later (whilst in a wheelchair for five weeks) went to third neuro who took the growing and multiplying lesions seriously.  

Bottom line:  get your reports.  They may or may not say something different than what the nurse said, but get them.  Also have you considered the possibility of fibromyalgia?  This is a painful, debilitating disease that is quite similar to MS in a lot of ways.  God bless you, Amy

[OperaMBA]

There are, as illustrated in the previous posts, many of us who exhibit debilitating symptoms which cannot be substantiated by the current testing technology.

Do not lose hope or heart.   Do not buy in to the hype when the neurologist arrogantly states that "your scan is normal".   I believe that what time will prove out is that the current technology and our understanding of the central nervous system is far short of what is necessary to diagnosis the maladies that are ailing all of us Limbolanders.

Have hope, you are not alone on this forum.   There are tons of knowledgeable and compassion people on this board that are experiencing situations similar to yours.

My prayers are with you.

Richard
OperaMBA

[itsallinmyhead1969]

thanks guys. my pain is like it is on the edge of something. it is like to me there is a nerve caught between something and being pinched or something. when i try to get up it catches and omg!!!! i have to stop and try to do it at a different angle. same with getting back down. i am having tingling in feet and numbness...sometimes feel like they are being shocked. neuro suspects ms, but who knows could have to do with the back. i also have it in my arms, cheeks and throat and head. (but am having cognition, memory, visual and hearing disturbances) when i walk my legs feel like spaghetti. sometimes i am sure the knees are going to go backwards. really weird stuff. just don't trust them anymore. i dont get to go back to the neuro until a week from monday. i have decided that if i get to that place where i start crying like that again with it, i am going to the VA hospital ER, even tho it is an hour away.  I will stay there until they find the problem.  I am tired of hurting this way.  there is something wrong.  the ct scan was done OUTSIDE the VA.  that radiologist saw degeneration in the spine, why didnt the one yesterday? there has to be something there. thanks again girls. i appreciate your comments. it makes me feel less alone in this.

[iluvmypuppies]

Hi,
Your story sounds familar to mine. At the present time I do not have any answers either.
What type of pain is it? My ankles lock up and then the pain travels to my hips its very sharp in nature. I either have to use a walker or stop /cry/stop/cry. My legs end up locking almost like my hips are dislocated, my ankles twisted. I also usually have to find somewhere to sit or lean over something to take the pressure off.
Its been progressing for over a year. It first started in the ankles now has spread through both legs. Plus tingling and numbness.
You hang in there. The right dr will have the right answer :)

[Janette2836]

I am sorry you did not get any answers to your problems & that the pain is so bad.  I know how upsetting it can be to get that answer but know that we care about you here & you are NOT alone!  Take care & do enjoy some icecream with the cry  :)  Tomorrow is right around the corner!

Janette

[itsallinmyhead1969]

i sent for some records recently and pulled them out a minute ago. i had a ct scan back in january. they did it with contrast. right there on the findings when they found my ovarian cyst which is probably pushing on my back also....it plainly says degenerative changes in the spine. im gonna take it with me when i go to see the neuro. he will have the results of the brain mri then. he didnt order the one of the back. the pcp did, i cant get much out of the pcp. im gonna ask for help from the neuro and show him the record of ct scan and see if i can get some help from him. i looked up degenerative changes and it came up with arthritis....which is what that doctor told me a couple of years ago.  the cyst probably isnt helping any.  i just know the pain is unbearable. thanks for popping in for me. i appreciate it.

[Lulu54]

Dear Itsallinmyhead,
There are just too many things happening to you from your list to be just in your head, in my thinking.  Of course I'm not the medical expert, but if I were you I would be traveling to see a neuro in a bigger place.  

it is NOT acceptable to be in pain, regardless of the cause, and it is your doctor's job to find the cause of the pain and treat it when possible.  Sunnytoday is so right - rest for a day or two because you need to keep fighting to be diagnosed.  

Don't doubt yourself...
Lulu

[Sunnytoday]

Sweetie, you just go and have that good cry. Grab some ice-cream, some comfort good and watch a good movie or anything that makes you unwind.


Now, get ready to put your fighting boots back and get back in there and stand up for yourself and what you believe. First, if you are having such symptoms (I belive you, I have had the symptoms you describe)... you need to see a GOOD neurologist, one preferably in a larger town that is willing to sit down and spend a good hour or hour and half with you and read HIMSELF your MRI's to see if they are normal. My first set was normal accordint to my first Dr. and lo and behold my 2nd ones done on better machines turned up big patchy areas. So, hang in there, and believe in yourself, don't give up hope.

Take a few days to chill, rejuvenate, and just gather yourself. We are here for you and then we will encourage you to try again.

Symptoms such as "I just dont get it. I can barely freakin walk. I can't sit still for long. I can't lay in one position for more than a few minutes.  I have to rotate like a stinking shiskabob.  I can't go shopping without leaning on something.  I have gone back to my cane for support. " don't just happen, and your doctor is there to help you, and is being paid to look for you and to search into what is happening, through MRI's, lab, and any means possible until he finds what is wrong and until then he should be offering coping mechanisms.

So, chin up and hang on ok??

Don't give up. I can't and neither can you, ok? :) Let me know how things are going and msg me this week if you want some-one to vent too.
~Sunnytoday~

[itsallinmyhead1969]

thanks