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spinal tap results......really upset!!!!!!

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Posted 6/19/2009 5:47 PM (GMT 0)
Hey all,

  I am at a loss. My doctor just called and said that my spinal fluid tests were normal.  He had his nurse tell me that there is no sign of ms in my spinal fluid. I know that something is wrong with me.

Has anyone ever had a test come back normal like that?   Now I am back to where I started. I have just wasted 4 years with treating for MS. I have tourtured myself with needles and pills by listening to a doctor that said he knew what was wrong with me.

I have had the visual tests come back and tell the doctor something has gone after my optic nerves. I did an eeg that said that something is wrong in my head. I have done the MRI's and they have all shown some kind of lesions. I am in extreme pain every day. I am exhausted every night. My vision is messed, my hearing isn't what it should be and I can't drink out of a glass anymore cuz I can't afford to keep buying new drinking glasses when I break them from dropping them.

I just want to know what's wrong with me!!! I just want the pain to stop!!!! I just want to not be tired anymore!!!!

I am so tired of doctors. I give up. I just don't know where to go from here.

Posted 6/19/2009 10:59 PM (GMT 0)
I didn't realize you were being treated for MS.  I thought you were diagnosed but not on meds due to insurance issues or something.  Wow!  Is your doctor recinding the diagnosis?  Not everyone with MS is positive for the o-bands in their cerebral spinal fluid. 

This is a huge upset for you I am sure.  I am very sorry.  What does the doctor say that the lesions are from? 

I know others have had a clean spinal tap and still have an MS diagnosis. This is weird.  What med have you been on for progression?  Is he no longer perscribing a progression therapy?

Posted 6/20/2009 2:16 AM (GMT 0)
Hey,

This new doctor wrote a script for copaxone. I have to get it from mail order and the company has already gone through my insurance company for approval. Now, I'm not sure if I'm even suppose to have it mailed to me. He set me up with an appointment for the begining of July.

I guess that I am suppose to live in limbo till then. I was on Beta Seron for about a year, but was unable to continue with it due to the loss of my medical insurance. I haven't been on any meds for over a year because I couldn't really afford it before.

I can see it now. My husband is gonna be gloating over this one. He loves to tell me that I make everything about me and my being sick. This is just gonna add fuel to that fire. The first fight we get into, he is gonna have a field day with this.

My mother in law seems to think that I might have Lupus now. I guess I'm gonna have to wait and see what this doctor has to say. Hey, if I don't like it, I can always go see a different neuro. There are a whole bunch that are alot closer to my house than this one. I've always had better luck with doctors closer to the big city, but maybe my luck has run out. Maybe I need to stay closer to home from now on.

Heather
Posted 6/20/2009 3:35 AM (GMT 0)
Heather,

This definitely warrants a second opinion.  I am not loving your husband by the way.  You need a solid support system, not someone that is belittling.  Hang in there!!! 

Posted 6/21/2009 2:09 PM (GMT 0)
Heather, my spinal tap came back clear and I'm sort of in your boat. I've had 2 neurologists say no it's not MS and 2 neurologists and a handful of other specialties (Urinary, Ortho) tell me it is.

I've finally told them I don't care what they CALL it, let's just figure out how to enable me to leave the house and to live a life again.

Sending you big hugs because this confusion and the pooh-poohing of others who don't have A CLUE how you're feeling is difficult. I was just telling my daughter that I've begun to feel like such a whiner that I don't call and vent or call and ask for help anymore. She, of course, put me in my place that she doesn't care if I am whining or not, she's here to help me.

It is SO frustrating.
Posted 6/21/2009 3:45 PM (GMT 0)
Hey Heather,

I don't understand, the spinal tap should not have been the deciding factor here.  That just does not make sense.  I know several people here with MS that don't have a postive spinal.  That can come and go from what I have heard.  The cerebral spinal fluid tends to have those 0-bands during an acute flare.  I happen to have had one then so I had o-bands.  If you are reasonably cool then they might not show.  They don't show in like ten to twenty percent of those diagnosed with MS anyway. 

Get a second opinion.  Have you seen an MS specialist?  Get someone to explain why you have lesions.  Lesions, especially with your symptoms, are NOT normal!!! 

I am frustrated for you.  Now that you have insurance again I would like to see what the copaxone can do for you.  It is getting a lot of attention lately as a very successful drug.  It seems obvious you have MS............but then again, I am not a doctor.

I want you better.  I want you to feel better and to get some semblance of a life back.

Posted 6/22/2009 5:31 AM (GMT 0)
Gretchen,

I love you!!! You have just echoed my ideas. I have decided that I am going to the appointment in July and asking this doctor to explain to me why i have all these symptoms. I asked them on the phone what was wrong with me then and they couldn't tell me anything but my results.

My first neuro was a specialist in MS and sleep related illness. Unfortunaly he had to close his practice due to his own medical problems. I am gonna listen to what this doctor says and if I don't agree with him, that will be my last appointment. I am going on the hunt for a new neuro. I did the research after his office told me that I had normal spinal fluid. Everything I found pretty much told met that a spinal tap for MS is nothing short of un-need torture. My first neuro never did one because all the other tests pointed in this direction.

This doctor pushed me into this test. I didn't want it done, but he made it sound like I didn't have a choice. He said it would help my disablity case if he could prove that I had o-bands in my spinal fluid. He also told me that he would treat me like I had MS until this test result came in. He said that if it came back normal that I didn't have MS. Then he went on to inform me that if it's not MS, it will end up one of 2 ways. It will be some kind of simple fix or it's gonna end up being worse than MS. He made it sound like this would be the final proof needed to say MS. That is how he explained it to my husband. He said that everyone that has MS has o-bands. I was his pin cushon for no reason.

I also noticed this week that my medical records from my old neuro are incomplete. I have forms coming from the nys medical board. They are gonna help me track down my test results so that my records are complete. I am missing at least a couple of MRI's, an EEG, a VER and a whole bunch of blood work.

Ya know, the more I think about this.....the more I want a new doctor!!!! The great part about our private insurance is that I can see any in-netowrk specialist without a referal. I can pick one off their web site and make my appointment. I think I will start with doctor researching again.

Heather
Posted 6/23/2009 1:20 AM (GMT 0)
Heather,

I agree with Gretchen and everyone else.....that a second opinion is needed.  I myself have been diagnosed with MS and have not had the spinal tap test done.  My Neurosurgeon told me how she had a personal friend that she knew without a doubt had to have MS and she conducted the spinal tap herself. She told me that her test came back normal, negative for the bands associated for MS. Therefore she wasn't going to waste her time doing one on me or putting me through it as she called it.  Secondly, my Neurologist told me basically the same thing that the Spinal Tap is positive is some and not in others. 

If your doctor is treating you this way about this test....just think how he/she will treat you in the future for a new symptom? a flare? or even have the bedside manners to speak to you as a "person".

Personally, I would want a Neuro/MS Specialist that I am comfortable with, that I can trust, and one that LISTENS to me.

I hope things improve for you but don't let that one test discourage you.

Sincerely,

PrayerWorks

Posted 6/23/2009 1:23 AM (GMT 0)
Oops! Sorry about my spelling/grammar error - forgot to check before [posting. I'm still having lots of ccognitvie problems myself.
Posted 6/23/2009 8:45 PM (GMT 0)
Prayer,

 

Thanks for your thoughts. I really miss my old doctor. He was the best. He always listened and he never pushed anything I told him off the the side or ignored me. I have found a neuro close to my house, but I don't like his partner. I think I'm gonna check my insurance web site for an MS Specialist.

 

I don't ever feel comfortable with any doctor but my kids doctor. And that's only because the man saved my 7 year olds life. Unfortunely, he only treats children, not adults. This is getting to the point of hit or miss for me. I will keep my fingers crossed that I will find a doctor that can help me and be some one that I like and trust.

 

That's all I can do for now.

 

Heather

Posted 6/25/2009 12:57 AM (GMT 0)
Hey Heather,

I understand just how you feel. I like the group of GP's I visit as they are both compassionate and open minded & will support me in anything I want to try but they do not really know anything about MS. The MS society here encourages everyone to do their own research & I follow that & also believe that no one knows me better than me. (I love your signature by the way & it says it all!)

Which is why I will not be going back to the last one I saw. Not only did he deny that loss of taste & smell were MS (I told him that I found it on the MS Soc website), he also tried to change my diagnosis to primary progressive from RRMS which became SPMS. I have had attacks for 30 years. Doing that I felt was both destructive & insensitive. Basically he was saying all my earlier attacks were nonsense, made up?.

Its one thing we can do vote with our feet (& our wallets) turn

Good luck. Keep looking there is a good one out there for you.
Posted 6/25/2009 2:38 AM (GMT 0)
Just wanted to let you know that I am another one here that had a normal spinal tap but was dx'd with MS a little over a year ago.  Also, I was just switched from Avonex to Copaxone, but have not started it yet.  Hang in there!  Kathy
Posted 6/30/2009 12:42 AM (GMT 0)
Hang in there Heather, and tell your husband he is lucky to have you!!!
Posted 6/30/2009 1:24 AM (GMT 0)
I have to call that doctor tomorrow and double check what time my appointment is. I know it's set for Thursday and I know which office I need to go to. I just can't seem to remember what time I have to be there.  I will let ya all know how he explains himself when I get home.

 

Thank you to everyone who listened and posted. Your comments made me realize that I need to find a new doctor and start from the begining again.

 

Heather

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