Could I finally have a diagnosis?

[min33gn]

by min33gn, Mar 21, 2010 06:20PM
To: CSF WBC's and bands
My neurologist wants to see me.  He said that I have Oligcolcal? Bands and WBC count norm is 0-5 in CSF and mine is 10.   I have MRI's that show demyelinaton at some point, appx 5 areas.  I have severe fatigue, depression, bowel problems, supposed micro-nystagmus (LensCrafters..appt with Opthalmalic Neurologist this coming Friday), frequent headaches and dizziness with occasional nausea, change in speech (like a feeling of weakness with speaking), tremors, weakness, poor balance, weird feeling (almost like a heaviness) in my legs, heat intolerance (makes me sick for days), occasional (monthly) severe itching all of my body that feels almost like needles that itch? if that makes since, and so on.   It sounds exaggerated, but it feels like my body is dying on the inside, no other way to describe the horrible weakness, fatigue and overall malaise I feel.  
I have had two neurologists over the last 6 years tell me its probably not MS.  And my current neurologist felt the same way until I did the spinal tap, now "he wants to see me sooner than later..." secondary to the current CSF results.  However, my evoked potential and somatosensory tests were negative.
At this point, I am so frustrated and almost ready to give up.  I feel like everyday gets harder to deal with this not knowing and not sure how many more times I can deal with a doctor telling me nothing is wrong.  
HELP!  Please...anyone with ideas or suggestions or opinions are greatly appreciated!

[Lulu54]

Melinda, First let me tell you that we all are sorry to hear you have MS.  This isn't the worst disease in the world but it sure can make life messy.  now that you know for sure what you are battling you can tacklet it with everything you can get.  

The treatments right now are lifelong - as long as they are helping to keep your MS quiet and stable, hyou should stay on your DMD.  One day they will have a cure for MS, but its not going to be tomorrow.


Basically all the DMDs have about the same success rate - my neuro cvompares it to the Pepsi vs Coke challenge.  It all depends on your personal preference, but they are all basically the same and do the same thing.  You won't make a wrong decision.....

I hope you will come through often and ask your questions - we're here for the journey.

wishing you well, Lulu

[biowham]

Melinda...here's hoping that your polyp is CIS (a cancer just in that place) and that they easily get it all. If that's the case, it really is one of the most operable and curable of the cancers. And please return religiously for your follow-up colonoscopies.

I hope the DMDs help you.

Bio

[min33gn]

Hi Quix,

Well, they diagnosed me with MS on Monday.  I am to decide if I want to go on Avonex or Rebif by next Wednesday.  I prefer subq opposed to intramuscular but I'm also very concerned about which one has shown better results, fewer side effects, etc..  My neurologist started me Amantadine and my PCP suggested Provigil instead.  My fatigue is horrible!  
I also had a colonoscopy last week and the found a Carcinoid tumor (polyp) and so I'm concerned about that now.  I have to follow up with a specialist so they can go back in and assess margins, depth, etc....  
So my fatigue and stress level are tremendous right now and I am having difficulties working (missed yesterday and today).  I feel very overwhelmed and actually a little fearful.  I am sooooo happy I can now put a name on it, but it doesnt make it easier (for some reason I thought it would...not sure why).
Is the treatment lifelong or does it vary patient to patient?  (Rebif or Avonex)

Thanks,
Melinda

[Quixotic1]

Have any of your symptoms ever gone away for a few months or so, only to come back?  Or gone away completely?  Or have they been present ever since they showed up?

Quix

[min33gn]

I had shingles once in my early twenties, and by 30 I started having tremors in my hands and head and that is when the fatigue began (I am 41 now).  Slowly the fatigue has worsened, now debillitating at times...even lying in bed feels exhausting.  I have fell out of the shower twice due to loss of balance.  I have frequent headaches and dizziness, when I talk it seems like I have poor control over my vocal cords (they feel weak and I hate talking sometimes because it takes so much effort), I get pins/needles sensations in all extremities intermittently, weird shooting pains in my spinal area and an electric type jolt down my right neck and right shoulder occasionally, severe constipation (having colonoscopy in two days) that has been difficult to manage, severe itching several times a month all over my body that is painful at the same time,nystagmus, etc...
My neurologist has been dismissing me, but I received a call this past Friday from the RN in his office stating they wanted to see me "sooner than later" because they found O-Bands in my CSF, and they did do a blood draw the same day. I have an appt March 29th with my him.  And this Friday with the opthalmalmic neurologist.
My MRI's started with 2 areas of demyelination and now show 5 areas (periventricular, frontal lobe, etc), Vit B12 was ok, Vit D was extremely low (7), all other tests for Lupus, Lyme, etc.. were negative.  
Thank you all so much for your prompt replies!!!!!!!  It means alot to have someone understand!  

Melinda

[Lulu54]

Welcome to this special place - we're sorry you're being tested for MS but are glad to have you here.  The assorted symptoms you describe could be MS, but could also be coming from a number of other assorted diseases.  Do you have the follow-up  appt. set with the neuro?  I sure hope it happens soon so you can be out of this waiting mode.

Not knowing what the enemy is puts you at such a disadvantage.  Once you get some answers from the doctor you will be able to think clearer about this.  Right now, being in the dark about your health, can be a very frightening spot.

In the meantime, I hope you will stick around.  Maybe read through some of our health pages (yellow icon, upper right side) and learn more.  The HP's were all written by members of our community and contain a wealth of information.

Welcome again and I hope to see you around,
Lulu

[Quixotic1]

I went through 9 neuros in 11 years.  #8 made the diagnosis.  the others just dismissed me as luney.

Q

[Quixotic1]

Hi, and welcome to the forum!  For right now I'm just going to talk about the meaning of some of the testing you have had done.  If you wouldn't mind, would you tell us the whole story of how your symptoms began, whether they have all been with you since the beginning?  Have any improved or gone away?  I'm looking for the pattern of the symptoms.  Where are the tremors, the weakness?  All of this is important to see if it even fits with MS.  It is impossible to see if symptoms seem like MS when they are just given in a list.  Many diseases cause the same symptoms as MS, but they usually appear in different patterns.

Now, apparently your neuro has not been impressed with your symptoms - or possibly no impressed with your MRI - up til now, though 5 areas of suggestive of demeylination is impressive to me.  Sort ofr sounds like your neuro has been dismissive and a stinker.

If the CSF shows 10 WBCs, that is 10 white blood cells.  In an adult that is marginally high, not terribly so.  But, an elevated white cell count in the spinal fluid (even a tiny one) suggests an infection.  So he might do some testing for that, including some viral antibody titres, testing for Lyme disease and such.  We'll have to wait until you get the results to know if the white cells were mostly a type indicating bacteria or a type indicate other infections (neutrophils vs lymphocytes).  Personally, I'll bet that the minimally high number doesn't mean anything.

Also, we would want to see the Total Protein level.  In MS it is normal or a little high.  In real infections it is usually quite elevated.

Then we look at the various results that indicate that there is some process in the Central Nervous System that is making a lot of the same antibodies over and over and over.  There are two tests for this.  One is the IgG Index and one is looking for Oligoclonal Bands (this is hard to say so almost everybody calls them "O-Bands".)

When there are more than two unique O-Bands that appear in the spinal fluid and not in the serum, we know that there is a source of inflammation caused by the immune system as is seen in MS.

Since your neuro told you there are O-Bands, it sounds like you have two or more.  Do you remember if they drew your blood the same day as the spinal tap?

If there are 2 or more "unique" O-Bands" then that is fairly strong evidence pointing toward MS.  It is not proof-positive.

Okay, have you made the next appointment with him???  That needs to be done.  You can also go get the spinal taps results and the blood test results before you see him.

Now, your visual evoked potential and your SSEP were negative.  That doesn't mean anything one way or another.  If they are positive, they point toward MS, but it they are negative, they don't say anything.

I'm glad you are seeing a neuro-ophthalmologist.  That will help to see if you have evidence of damage in the visual system or the system that keeps you balanced or that helps you move your eyes together.

Right now it sounds like you are both afraid of what this business about O-Bands might mean (like maybe MS) and at the same time are afraid that it won't mean anything and you will still be in the dark and feeling like cr*p, like your life is slowly ending.  We ALL know that feeling.  You desperately want to know and are afraid of one more visit that throws you out into the dark.

It sounds like you are making progess toward more info and maybe a diagnosis.  Hang on, stay with us here and we'll hold your hand through this.  You won't believe how many people here have walked in your shoes.  I certainly have.

For now, would you tell us the story of how all of this has unfolded - what came first, where the different symptoms are and such?

we'll be watching.

Quix, MD

[Celery47]

I can understand your feelings completely.  I mean, it sounds like you've got plenty of reason to be sure that something is wrong - and after a while, you just need to KNOW, right?  :(  I'm no doctor, but sure sounds like MS to me.  I think a lot of doctors, especially those who aren't real big on disease modifying drugs, like to push the diagnosis until the last possible moment.  Ugh.  I just wanted to say I'm pulling for you, and I hope this gets settled soon!  Good luck to you.

[PastorDan]

Not sure you have all the words in the right sequence with respect to the CSF.  Oligoclonal bands in the CSF must be compared to those in the blood serum AT THE SAME TIME THE CSF WAS TESTED.  Two to four MORE in CSF than in serum is usually counted as a strong indicator toward MS (did I word that right, Q, et al.?).  WBC count is another topic, both in CSF and blood.  Not sure there's any relationship between WBC's and O-bands.  I've been wrong before, though.  Frequently, in fact.

Two neuros in 6 years...  I'm nearer 6 neuros in 2 years.

I have very few headaches, and no detectable nystagmus, but the rest sounds all too familiar.