United Brachial Plexus Network, Inc.

Ok got that done and over with 2 hrs glad the doctor gave me a valuim to take other wise I never would have been able to hold still. Don't see the doctor till the 25th
Thanks for all your prayers it really helps I don't know what I would do without all your caring support
Mare

Well I saw the neuro again yesterday with the new MRI and blood work that was fine and the MRI with contrast said the same thing as the last MRI possible MS or Tumor so he was like I think its MS even though you don't have any symptoms so I'm going to refer you to the MS doctor that works with me. So I asked shouldn't we be ruling out a tumor since I do have symptoms of that or are we going to wait till it gets so bad it kills me?? I asked about getting to see a neuro surgeon and an MRI of the whole spine and spinal tap not that I want it be poked with a huge needle but I want to know whats wrong with me. So he gave me a script to get a complete MRI of the spine not just the neck like the other two. And he is going to have a neuro surgeon call me but I didn't wait I called University of PA and am trying to get to see one of there Neuro surgeons. So its back to waiting

Mare,
I just know that you will get answers at the University of Pennsylvania. I'm still "stormin heaven" for you.

<<<<HUGS))))
Carolyn J

Oh Mare,
How horrible, I love it.....well, you have no symptoms, but I think you have MS!!!!! Wow , now we really know whay they call it "PRACTICING" medicine !!! Take care and we will be continuing to pray for you !!!
GAYLE

Mare
This is hard and for a change I have to agree with your doctor when he said to see and MS doctor. You need the other tests to rule out a tumor but some of your recent episodes could lead a doctor to think it's MS. Especially the L'Hermitte's sign. You know my daughter just went through this and has MS. A spinal tap is supposed to rule out MS but my niece had it and they said no MS and then years later they finally diagnosed her with MS. I think you should rule out a tumor first...
The reason MS is so hard to diagnose is because of all the various ways it show up. MS had many different types and is often not diagnosed at all or miss diagnose so ruling out all other possible things is a good way to go.
Let's hope you get to the bottom of this and can move forward to gaining some better health.
Kath robpi/adult

Well the spinal tap is to rule out a tumor the doctor said it wouldn't tell about MS but the brain MRI should no brain lesions the l"hermitte's can show either tumor or MS but its strange that the doctor has not put a name to the vibration or buzzing in my spine you ladies put a name to it right away and he has said nothing about it and really is not concerned by it said it could be any number of things that are causing this. And this is the reason I'm sitting on his examime table to find out what this weird sensation is no other reason for me being there. Well they moved my next MRI to tomorrow then the 4th is the neurosurgeon at RWJ the MS doctor is on the 18th and I'm still waiting for an appointment at University of PA. These doctors are starting to get on my nerves its prtty bad when I have to tell them what test I want and what type of doctors I need to see.

Mare
Many times the only way to determine that someone has MS is by Spinal Tap. There is something that shows up in the fluid. It's a marker of some kind for MS.

Man can these docs drive you crazy. You must be your on advocate both for bpi and all things now.

Kath

Mare,
The lumbar puncture (spinal tap) will or rather can show what are called O-Bands.

OligoClonal Bands (Gamma Globulin Bands) - A postive finding from the chemical analysis of ImmunoGlobulin (IgG) found in CerebroSpinal Fluid. IgG Bands indicates an Intrathecal production of AntiBodies. This signifies an Immune response to a nonspecific CNS Antigen.

- IgG Banding is commonly found during a current or very recent exacerbation. It is present in 50 - 75% of patients undergoing a diagnosis for MS, and eventually in 87% - 95% of all MSers.

http://www.geocities.com/hotsprings/3468/gloss.html

So they will find nothing? since I'm not having a current and have't had a recent exacerbation I'v had nothing but the tingling in my spine when I look down which the doctors said could be anything and thats all I want to know about. Boy they better not be poking me for no reason, can they put you to sleep for that the neurologist said no but he's not the one doing it.

They can find something anyway in the spinal fluid as you have had recent attacks. Not definite, but possible.

They freeze you back/patch where they insert the needle for the LP. It's not that bad really, I've had them before. Just remember to drink plenty of fluids after, and to lie down for one hr after they do it. You may get a headache from it.