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Old 02-17-2006, 03:32 PM   #1
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kelpie HB User
Seeing the MS Specialist tomorrow...

Hi all,

Sorry I just need to vent - my nerves are frazzled - I've been 3-1/2 years with symptoms, an abnormal MRI (six lesions), and tomorrow have to fly to the city where the specialist is to get the results of my LP. After reading all the ordeals so many of you are going through, those diagnosed and undiagnosed my heart really goes out to all of you with this disease and those of you who are still in the limbo of not knowing what's going on. The latter is where I've been and it's not only scary but debilitating as I feel I can't get on with life. I know there's a lot to learn here about patience and appreciating the things that I can still do, and I am trying to learn those lessons. In the end, we really do have to be our own advocate, and I've been trying to do as much research as possible - though neurological problems are complex and not easy to grasp without a medical background.

My other concern is the cost of treatment for MS - reading that the meds can cost up to $1500 month before copay which probably runs at least 10% or more of that.

I'm wondering - as it seems those people who have been diagnosed - what determines the frequency of how often you take the shot, as it seems I've read some people have to do it daily (can that be right? ) while others take shots weekly or even monthly?

And are there people here who have MS but had a normal LP reading?

Well, I'm rambling really - just praying for the best of all possible scenarios and that the mystery at least will be solved re: these symptoms.

Take care everybody and thanks a million for listening to this rant!

kelpie

 
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Old 02-17-2006, 07:14 PM   #2
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duttin HB Userduttin HB User
Re: Seeing the MS Specialist tomorrow...

Kelpie,
MS therapy drogs are expensive, 10% not unreasonable.It depends what crab they put you on depends on how often you take it.

LP is used to rule out other diseases and is positive in some MS cases.You can have a normal LP and still have MS. You can have a clean MRI and still have MS.

MS,has multiple symptoms and effects the central nervous system from brain to low back.

Best wishes on your trip.I hope you get the answers from the MS specialist 3 1/2 years a long wait.

prayers to you

Toni

 
Old 02-17-2006, 09:17 PM   #3
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Sharon Grace HB User
Re: Seeing the MS Specialist tomorrow...

Hi kelpie! I hope you finally get some answers. I just wanted to clear up the injection questions you had - there are currently four different drug therapies out there. Avonex is an intra-muscular injection taken once a week, Betaseron is a sub-q injection (just under the skin) and I believe taken every other day. Rebif is a sub-q injection taken three times a week, and Copaxone is a sub-q injection taken daily (yep-every day). You can get lots of info of each of these therapies online. Also, your Neurologist should have packets of info on all these drugs to send home with you to read up to compare them. Also, those of us on this board who take these medications can be a wealth of information - just ask - we're here to help. Good luck in your search for answers. Sharon Grace

 
Old 04-14-2006, 12:44 AM   #4
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Question Re: Seeing the MS Specialist tomorrow...

Hi all, well, some time has passed since I saw the specialist and I'd love some feedback on what's happened in my case - and possibly many of you have had similar experiences.

I saw the MS specialist in Feb and he said my LP showed "no proteins" and "no O-bands". I followed up with my regular neurologist who basically read me the letter written by the MS specialist, though I'd certainly have hoped he'd also looked at the lab report for the LP! Anyway, this neurologist concurred with the specialist that I did *not* have MS. But read on!

Well, long story short, I ended up seeing my primary care doctor today, a family practitioner and she asked, "whatever happened with your spinal?" I told her it all came back normal, and she dug through the paper work in my file, and said, "Really? Who told you that?" And I told her what the MS specialist had said, and then she showed me the lab report - which she said is a typical format with this lab and is confusing, because at first it reads:

NO BANDS then beneath that it says there are "5 distinct bands that are not present in the patient's corresponding serum sample. These bands indicate abnormal synthesis of gammaglobulins in the central nervous system. This finding is supportive of multiple sclerosis..." (and to interpret the data with other clinical findings.) Btw, I had two MRIs which show 6 lesions in the brain.

So my PCP calls the general neurologist, reads this to him over the phone, and he says he's ready to make a diagnosis of MS and to send me over for an appointment and we'll decide on a course of treatment. But after that call, she decides to call the MS specialist, and he tells her the findings do not indicate MS at all, that I do not meet the McDonald criteria, and when she asks about the bands, he insists that there were "no proteins" (even though she explained about the confusing nature of the lab's format for the report), he inisisted I don't have MS.

So, after those two calls, the PCP feels very uncertain with these two neurologists disagreeing with each other and I'm in major shock and disbelief, because I was told in February I definitely don't have MS!!! :


Well, because I have an HMO I have to go back to the neurologist who (by now even my PCP doesn't trust) that wants to put me on copaxone, but I want to ask him to send me to a 3rd neurologist - not back to the specialist who must have misread my lab -- for a 3rd opinion!

sorry to be so long-winded, but does this CSF finding sound like a positive finding to you folks? Has anyone had the experience of having a neurologist misread their lab then not want to cop to the mistake?

With 5 O-bands and 6 brain lesions, doesn't that sound like I meet the McDonald criteria? Is it possible to have O-bands but no proteins?

Sorry, again for the length of this post, but these doctors don't inspire my confidence! Thank the angels for my PCP because I'd never have found this out without her double checking my lab for herself!

kelpie

 
Old 04-14-2006, 05:39 AM   #5
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duttin HB Userduttin HB User
Re: Seeing the MS Specialist tomorrow...

Kelpie,

This whole thing is not right.My neurologist says possible MS,because the lp shows no o-bands,but high elevation of myelin basic protein.Borderline line abnormal evoked potentials and 1 brain lesion.
The whole thing is frustrating.One DR says one thing and another something else.
The McDonald Criteria score is so dang gone confusing.
Your PCP is right on top of things,hang on to him.your clinical evidence definatly states there is MS,they say starting meds early can prevent disabilities.Take some time and absorb what you've been told.

Prayers to you
Toni

 
Old 04-14-2006, 10:13 AM   #6
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kelpie HB User
Re: Seeing the MS Specialist tomorrow...

Thank you, Toni, for your input. I must admit I'm going a little nuts wondering how the MS specialist maintains the LP is not a positive finding, and what it means if there are five bands but no protein. And knowing that the general neurologist is ready to jump into diagnosing MS and putting me on medication does not inspire me to trust either doctor. My PCP said she's unable to make a diagnosis because she's not a neurologist, but she was not happy with either neurologist's response and said they both acted a bit defensive. I guess I'll have to seek a 3rd neurologist to get an objective reading of the labwork. Hopefully the HMO will cover this.

I hope you get your situation resolved too. Yes, the criteria is frustrating, especially when the LP is so invasive, one hopes to at least be able to interpret the results! One thing my neurologist told me when he first concurred with the negative finding is, at some point they may want to repeat the test. Did your doctor suggest such a possibility to you?

Best wishes to you also. Take care.

kelpie

 
Old 04-14-2006, 11:12 AM   #7
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lilc HB User
Re: Seeing the MS Specialist tomorrow...

Well, this may just add to the confusion, but here's my "take" on the LP. I did not have O-bands (oligoclonal). I got the impression the O-bands were the most common(?) bands found in MS patients. I did have M-band(s) (monoclonal) and apparently also had MBP present. In the end my neuro said that I had 2 of 3 positive indicators from the LP. All of my evoked potentials were completely normal. I had 2 brain MRIs 3 months apart. First one showed about 6 small lesions, the second showed several "new" lesions. The net result was a dx of "mild MS", and I've been on Copaxone since.
My neuro always sits down with lab results and SHOWS them to me. We discuss them. Sounds like your PCP is sort of like that - thank God! Try to get the 3rd opinion, but recognize that in the end you know better than any doctor - "specialist" or not - what your body is telling you.

 
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