crushed and confused......

[kathykush]

well I aknow m posting today because of my expierences yesterday. I dont even know where to start. so meny oppions have really begun to confuse me. So I have not been DX with anything except for degerative disc disorder. yesterday I saw a neuro-opthaimologist. he said " You dont have MS"...."you need a phychotist"....ok so thats ok... except that I have already been down that road. and when I told him that he had little regard for what I had to say. I was told all my tests MRI and VER  were normal so I DONT have ms. NO lession no ms. so I told him what I had learned on here...."I read  that sometimes MS lessions are to small to see, or that they could be missed on an mri" I was then "reassured" that MS can now be DX'ed definatively with imagineing studies., and I dont have it"  so now I am confused, broke,(as it cost me 456.00 yesterday). To be honest...it is possible that after yeterday I DO need a phychotrist, as I am really struggleing to go on. I am so tired of being a pin cusion and taking time from my family and money from my family
my regular neuro, has scheduled an LP, I told the doc yeaterday....he said I dont need it what I need more anti-anxiety drugs, and relaxation techneques (I am sure I have great relaxation techneques as I have had 5 natural child births, including 2 homebirths )
.I was told that I had a racing pulse and my blood pressure was low so I was having anxiety....I told him I just had a huge starbucks on the 2 hour drive there, and also informed him that my BP is always low. (86/62) and my heart always races, as I have a a heritary anemia.  
I asked about my bladder, he said I have had a lot of children so I should expect to be damaged! really?!?!? because my mother gave birth to 8 children and she didnt have this problem ...my BFF has 7 children and no problems. (and I have been checked for prolaspe).
He even went so far as to say I dont have degeranative disc disorder, because I am to young. and that I saw on the xray myself! and was given a perminately disabled plaquard.
please help me. i dont know what to do. I dont undrestand, i really need to see the end of this BS. if this is all in my head then I sure dont want to have an LP if I dont need one! surely that would make one need help.
today I see my hemotologist. I dont want to go. tomorrow I have PT and I dont want to do that either, I am not really sure what the point is.... all I know is I am sick and tired of being sick and tired..........I wish I could just end this all right now and be done. done with all this! done with pain,  done with life! done!
if I may say so, I dont have the strenght to fight anymore, to talk anymore, to try to explain anymore. I just want to wake up and have it all be better,

[Charley123]

I really feel for all that you are going through.  I've been going through that too.  I think you've gotten some really good advice here, so ditto to all of the above.  Hugs to you, Charley,

[kathykush]

my  appoligies  to  both  Alex  and  Mary  and  those  with  vision  problems.  I  will

try  to  do  better  at  my  spaceing. I  will  try  to do  better  thanks  Mary  I   do  

I  do  have  a councilor  that  I  talk  to  each  week.  I  think  anyone  who  is going  

through major  medical  or  life  issues  should  have  that.  And  thank  you  so  

much  for  your  concern  for  me.  

you  are  all  correct  this  is  so  much  easier  to read when  it  is  spaced.....

best  wishes  for  a  great  day  to  all  .

[twopack]

I like this plan MUCH better :)  So glad to hear it before I'm off to bed.


(Next time could you put some spaces in your post please?  I don't care if placement makes any sense to an English teacher.  It's just for the comfort of goofy eyeballs.  TIA)

Peaceful sleep to you.

Mary

[kathykush]

THANK YOU EVERYONE! Your kindness has really filled my heart.I cant tell you what you all mean to me, I dont have an extended family other then my children who, well its not thier job to be my support. this has really touched me that their are honest people who care and care about a stranger at theat even. I am amazed and renewed by your kindness. it has casued me to do a bit of a life inventory. and I have come to the conclusion.... THIS IS NUTS! geese looking for answers, this has really started to take over my life. I have had 5 doctors appointments last week.  I think I found my breaking point. I have made the decision that I will continue with the LP. (does anyone know about bands on bone marrow) and then I will continue my care with my phisitrist. I dont have a good PC.  as a matter of fact I am going to go to a new PC in the next two weeks. I am hopeful as I have heard a lot of things about him..... I guess if it has to be "just anxiety" then really I should be happy. I would be happy IF I could believe that. I do have a rehab doc who will work with my legs and keep me out of pain. I will go to urology, to see whats up there. and if I have a new problem then I will go to neuro, as new problems arise...should they arise then I will deal with them. one at a time.... i think I must have had an attack or something, because all of a sudden everything was bad, and it hasnt gotten better. which has caused me to chse my tail so to speak..again thank you.

[starryeyes1]

I just read your posting. I can completely relate to the emotions you are going through. I had to do the research and request from my PCP for  specific tests to be done so that my neuro could rule things out. I had an opthalmology appt because I read that it could show something that is linked to MS. Mine came out fine..no optic neuritis.

I had VEP 2x..nerve conduction tests, blood work, many MRI's. All came out normal.

My neuro refused to believe that there was anything wrong with me..even after having MRI's showing a lesion. (just 1) He would tell me it was "insignificant". I couldn't walk without help (dizziness) but yet there was nothing wrong with me.

He said I was just too stressed and needed counseling. This went on for a year and a half, making me feel like I was crazy.. Each time I saw the neuro, he would be sarcastic and rude and would schedule me out 4 months at a time.

I began seeking a specialist on the computer. I live in AZ but have family in WA. I ended up changing my insurance to one where I can pick my own Dr. It cost more. I basically took a risk and went up to WA imagining that I would be laughed at again.

I had sent my med records up ahead of time. It took him 10 min to tell me it was MS and I didn't have 1 lesion, I had 4. The very same MRI's that were read by the radiologist and neurologist showed 3 more lesions that they missed repeatedly. I thought steroids would fix the balance problems and dizziness, but my Dr said that because the "attack" went so long without treatment, it was going to stay.

My advice to you-- Be vigilant. Don't let somebody tell you there is nothing wrong with you when you know that there is. MS is not diagnosed with just a few tests. In my case it was some very small lesions missed by several "professionals" and a whole lot of symptoms, family history (my dad has it)  and a Spinal Tap to get this diagnosis. On the one hand I am glad to have answers, on the other, I never wanted an incurable disease.

I hope you get some answers soon. Don't give up. We are here to support you through this journey.

Take Care
Kristi

[twopack]

I hate that anyone, but especially a doctor who has pledged to DO NO HARM, can somehow convince himself that this is a proper way to communicate with another person.

BUT, my main concern right now is for YOU!  Please DO NOT give your power away to ANYONE.  Be mad at him.  Fighting mad.  Just don't give him control over what you know to be true about yourself.  This is a deficit is him, not you.

PLEASE DO get some help immediately to get your depression and emotions to a manageable place.  You have children (five I believe?)  who need you.  Even if you convince yourself otherwise, they most definitely do NOT need the legacy of a mother who choose to check out of their lives.  You sound like you're very close to being beyond the 'wishing' stage of despair.

Forgive me if I'm reading more into your post than you intended.  I care about you finding someone who will listen and work with you to diagnose the origin of your suffering.  But I care MORE about YOU as a person.  If you don't have someone you can make vocal (and preferably physical) contact with to talk about this, please consider calling a local crisis center.

Expecting to hear from you soon.
Mary

[skyeblues]

I believe that my six year old daughter has more compassion than that doc.

I think sometimes people have no idea of the pain that careless words can inflict.

I know from experience how hard it is to process the input of such an unhelpful person.

I hope you can separate out the useful information you have gotten and give yourself some slack to deal with all of this.

Please take care,

skye

[Lulu54]

The neuroopthamologist can be told goodbye ... you don't need that kind of bad medicine.  He is in no way qualified to make a psychiatric diagnosis,  just like a psychiatrist doesn't prescribe eye glasses.  

where is the compassion in all this?  

Let me add, I don't have vision problems (20/20 in both eyes), have no evidence of optic neuritis and yet I do have MS.  His blanket generalizations that he used for you don't fit the process many have to go through.

And what does an eye doctor know about bladders, anyway?  I sure wouldn't want him examining me that way.  :-)

Your frustration is very understandable.  None of this is easy - in either time or resources.  You have the extra load of your family to plan for too.  Juggling all of this around seeing a doctor who does this kind of damage is disheartening.

The regular neuro you are seeing sounds like he is willing to work with you.  Please don't give up - if you know something is wrong, then there probably is something wrong. If it is something you can live with, then there is nothing wrong with putting all this aside for a while.  

Quix went several years without a dx, because her MRI didn't show lesions either.  Just because they can't see them doesn't mean they aren't there.

Alex and Shelly have given you wonderful advice.  I hope you take something positive and forward moving out of all these words.

be well,
Lulu

Put your arms around yourself and take a big giant hug from me.  I wish I could do it in person for you.  

be well,
Lulu

[HVAC]

I understand your frustration.I went through years of tests. It is not a fun place to be. It helps to understand how specialists think.

Neuro opthamolologist only worry about eyes and brain scans. If your problem does not fall in their area they send you on your way. It is logical.

Most of medicine is trouble shooting which is a kinda of a flow chart. I used them to fix air conditioners. If this works you go on to this, if that works you go on to this and so on until you get to something that does not  work and then you branch out to possibilities why it does not work.

The trouble is too little or too much information throws the  trouble shooting process off.  My Neurologist wants very little information. In fact all the ones I have seen ask What bothers you the most? I have a second to answer and that is it. No lengthy discussion. Neurologist tell most about you from the reflexes and the other simple neurological  tests they do. They can pin point where damage is in your CNS from that. I don't talk  to my Neurologist about my asthma, or my two blown disks, or my knee, my shoulders, or my migraines. He is a Specialist not a PCP so he does to care about all that. Neurologist are "Just the facts mam"  doctors.

A LP can't hurt. It is not an end all it is another piece of the puzzle. No test proves anything it just helps put things together or eliminate.

It will help if you could break up your writing those of us with eye problems have trouble with a big block of print.

Have a good vent and then decide which problem you need to address and back at it.
Alex

[shelly62]

I totally know how frustrating it is. I too and trying to get answers since I keep getting new symptoms the past 2 years and no definate answers. MRI a year ago negative and have not gone any further. Thank goodness unlike you I don't have pain. Just in the last year diagnosed with Uveitis, severe sleep apnea, periodic limb movement, and so on. Lots of testing to rule things out and drugs for the symptoms but I don't feel I am getting answers.

The thing that is helping me is I have an excellent PA who will try anything at this point if I ask as she is out of idea's. Sleep specialist may do a LP for possible Narcolepsy diagnosis so will ask him to check for MS also and I am sure he will. I guess the key is to just hang in there and just keep trying or get other doc opinions. I have also read alot about MRI normal results is not a definite neg result for MS. I have read alot that are diagnosed with just clinical symptoms. Even if you have to travel find a specialist in MS and go with word of mouth. You need to feel comfortable with your provider to feel comfortable with his diagnosis.

MS can take years to diagnose also so if they can treat the pain and other issues you are having then maybe take a break and give it some more time before starting to search again. Don't know if this helps any but know you have alot of people out there just like you for support and hopefully you have a good support system with family and friends around you.