This Is MS Multiple Sclerosis Knowledge & Support Community

Dave,
My nuerologist pretty much followed the McDonald Criteria (I had only one lesion along with clinical symptoms at first and the multiple MRI's were used to detect additional activity in space and time). The elimination of other conditions is probably dependent on the neuro (and the patient). When I saw the "possible MS" words on the first MRI, I was stunned, went into research mode, and then insisted on ruling out EVERYTHING else first. I knew that Lyme disease was a potential for me as I do a great deal of work in the woods. Also, when I was found to be B12 and D deficient, it just added fuel to the fire of my inability to accept the MS. All those additional tests were done at my request and were necessary for me to come to terms and accept with my diagnosis. For me, it took that process and informwation before I could accept this life changer called MS. Maybe I over-did it in some eyes, but that's my story and I'm just glad I had the insurance and a neuro who was willing to work with me. She is still my doc today.

LoveActually,

I had the lumbar puncture since I was in the same boat as you. I had some MS symptoms, one lesion and a couple spots in my spinal column from MRI's. The Nuero ordered the LP and I went with that. The results were that I had 4 bands in the CSF and none in my blood... so thus, its MS.

What was so aweful was recovery from the LP. I was told by my Nuero that since I am young (30), tall (5'8"), thin (145) and female I was at high risk of getting spinal headaches. I thought great, I'm beautiful and I can take an asprin... how nice of her to say all those sweet things to me. Looking at your photo, you look like you fall into the same boat as me.

The spinal headaches are not headaches. They are pure evil and they come on slowly tricking you into thinking you are fine so you stand up to much. Thursday was the LP and by Sat night I was a crying ball of mess. I went to urgent care and they doped me up on Morophine and gave me a bag of IV fluid. The next morning, I stood up and my head exploded. I couldnt stand without a burring searing pain like nothing I had felt before. I had to have my wonderful boyfriend dress me and drive me to the ER. He wanted to call an ambulance, but I wasnt sure what they would do for me and I wasnt very rational. At the ER, I got more morophine and IV but a very wonderful man performed a blood patch. This is very simple... they take blood from your arm and put it in on top of the LP site. This creates a clot in your spinal coloumn and you quit leaking out all your CSF and it increases the pressure in your brain. It turns out your brain floats in the CSF and if you are leaking it like young, tall, thin women seem prone too... your brain falls down a bit and that hurts badly!

The LP was easy, the blood patch was easy, but if you get bad headaches... its bad. At the time I didnt think the headaches were worth the diagnosis... now that its been a couple months... I dont know if I would consider doing it again, but my memory of it is fading and I think if it meant getting treatment for something like MS, I guess it was worth it.

I was told when I was diagnosed (back in 99) that you had to test positive on two test. For me mri and lumbar puncture. For me it was not a big deal and it had been three years of symptoms, so I was pleased to finally have something to call it.

Ann

As msgator said, two tests were required in the late '90's. Since I did not want LP, the neuro required evoked potential testing as the 2nd evidence.

Thank you all for your reply's.

@ Patientx - I did have an MRI before my diagnosis in October but not around that time. It was in June 2009. The brain MRI showed 3 lesions then and the one I had last week, I'm not sure what it showed. I'll find out today at my neuro's.

I'm going to see what they say when I ask if they're 100% sure I have MS. I don't want to be injecting myself daily on a hunch. The positive to this is I have an excellent neuro and I trust his diagnosis/opinion 100% but I just want to be absolutely sure that he has viewed everything and not just taken my past neuro's word for it on the diagnosis.

I have been tested for almost everything under the sun. Including Lyme, B-12, D and tons of others. I do have low B-12 but even when my levels were heightened with injections, my symptoms continued.

If the neuro suggests an LP, I'll do it. I've heard all about the spinal headaches and the blood patch so I think if I'm that unlucky to get one, I'll head to the ER asap! I don't understand why a particular age, weight and height will be more susceptible to the spinal headache but I'll definitely be ready for it since I fit the profile.

Love,
Please keep us posted on the outcome of your MRI and your decision about the LP. You are in my thoughts.

LoveActually wrote:@ Patientx - I did have an MRI before my diagnosis in October but not around that time. It was in June 2009. The brain MRI showed 3 lesions then and the one I had last week, I'm not sure what it showed. I'll find out today at my neuro's.

The reason I asked, is that some neurologists will see an unchanged MRI from one year to the next, and (incorrectly) question the initial MS diagnosis. I never understood this, since a stable MRI is usually one of the goals of MS treatment.

It sounds like you were pretty well worked up for differential diagnoses. I hope your neurologist can clear some things up for you.

Thank you guys so much! Well here's how my appointment went...

I saw my NP yesterday and asked very specific question. She clarified that the spot on my spine is not a lesion but a spacing that is larger than normal. My brain MRI has not changed since a year ago which is good news but now they're telling me I have 2 lesions when I thought I had 3. The 2 lesions are the same however one is still very large and not consistent with MS. All news to me.

I asked if my new neuro actually looked over all my tests when I was switched to him after his partner left for volunteer work in another country. She didn't know the answer to that but I was able to get in for an appointment next Tuesday. That's a freakin' miracle to get in with him that quickly. Him and I will discuss all of this at that appointment. The NP wants me to see a Neuro Opthamologist for my eye issues and also speak to my GP about seeing an ENT for my ringing.

When I told her at the beginning of my appointment that the ER neuro's asked why I thought I had MS, she looked appauled. By the end of the appointment and looking through all my shit, she was pretty much not sure if I had MS or not but she was in no position to lay down a diagnosis as she is just a NP.

I was PISSED! because I've been injecting myself daily with Copaxone. She said that it may very well be MS and I'm just catching it early because all my symptoms match up with those consistent with MS. I've also been tested for many diseases that mimic MS so who knows. I see a LP in my future.

I trust my neuro 100% and he is highly regarded within the medical community so I have no issues taking what he says and rolling with it. I can't blame him for trusting his partner either but I would've expected my tests and other documentation to be looked over the moment he accepted me as a patient, or at least when I had my first appointment with him.

SO WHERE ARE WE NOW: Now I wait until Tuesday to talk with him directly. They squeezed me in for a 30 minute appointment but I see this going much longer. If he wants an LP, I'll do it. I'll continue to inject until that appointment and at least see what he says. After that, I don't know. I'm OK. Other than my normal issues I'm mentally alright today. Yesterday, not so much. My biggest concern is what do I have? And if it's not MS, why do I have such a large spot in my brain.

Unfortunately, I can't clone myself to see if it's the Copaxone that has kept those lesions in check or if they're just not changing. I'll never know. The small one was mentioned to possibly be migraine related and I do get the occasional migraine so I can accept that with the small one.

Thank you all for your support through this. Love you! Like a fat man loves cake. =) YUM!

I had a spinal tap done in January and I am still not over it. Like one of the other ladies in this thread, I am very thin (5 foot six). I also had scoliosis (spelling?) or a curved spine as a kid so the neurologist had a heck of a time inserting the needle. It took him about twenty minutes and I was a basket case. I felt I was being murdered (like in the movie Saw!), I was cursing and crying and the neurologist actually cursed back at me (in a joking way of course!)

The initial recovery was ok, but since then I have had lower back issues. When I bend over to wash my hair in the sink I can't get back up-I have to get up verrrry slowly due to the pain around the area of the puncture.

Is this normal and who would I go to to get this checked? Also, how would they check it?

Thank you

It will goes as the fluid build back. If it persist; they will inject your own blood to supplement the void of CSF.

But mostly try to stay in bed; drink a lot of water.


Be well!

if this is a procedure done months ago and you do not have the murderous postural headache indicating an unhealed hole where the needle went in, i think your fluid levels are probably adequate but there are other things going on.

forgive me going straight to nutrition, it's just what i do. here is a link to one of my favourite sites on nutrition and a multitude of health issues. my signature links provide other info you may find useful.

http://www.ctds.info/spinecurve.html#nutrition
great info. i am amazed there is no mention of vitamin D3 here, however. the relationship between vitamin d3 and osteoporosis (closely linked to scoliosis) is known.. level has to be at least in the 70s (nmol/L) to keep PTH down and prevent osteoporosis. should be even higher 100-150 nmol/L to help deal with MS.

zinc in scoliosis doesn't seem to be much of an issue, but it is in ms, so if you're interested and have not already done so, read up on zinc status in ms.

an abstract on another scoliosis relevant yet not mentioned nutrient: selenium
http://www.springerlink.com/content/n585w52214151593/

also check out the main page http://www.ctds.info/ to see all the diverse health issues addressed.

HTH!

Thanks so much for the information. I have just read over the site you referred me to....lots to think about, more than I realized in fact.

you're welcome, happy reading