Hi captsdauhtr,
Welcome to the side of the aisle that has those of us who are diagnosed with MS. You have lots of good company here and we will be more than willing to help you with any questions you might have.
It sounds like your doctor has done all the right things - getting on a dmd early is so key to controlling relapses.
It might surprise you how many of us here were diagnosed with MS when the doctors were looking for other things. My diagnosis was set off by testing for peripheral neuropathy. It seems to be almost an accidental dx for many people.
I hope your MS continues to stay in the background. Learn as much as you can about MS - take the mystery out of this disease. Knowledge is power.
be well,
Lulu
Today I had a follow up appt to pick my meds. I chose Rebif for now. We will see how that goes. Also had the VEP test today. Left eye came back borderline abnormal. Doc says MS is probably attacking optic nerve. I have had eye pain in left eye for two weeks consistently. Doing steroid infusion treatment for next three days at home. Have no idea what to expect nor have I had a chance for any of this to truly digest. I only went in for migraines in October, that's it. Oh well, gotta keep on truckin along cuz my five year old sure ain't slowing down! lol
Well, today I was diagnosed with definite MS after the brain MRI and abnormal CSF. All because I went to a doctor for migraines! Turns out the migraines are a completely separate issue. The MS was detected so early that I will be starting disease modifying drugs next week to hopefully prolong any attacks for many years (I have not had a first attack). So far, the doc says I only suffer from the "background noise" of MS...the fatigue, inability to control body temperature (freezing cold to my core), eye pain. Hopefully I can keep my life manageable.
Here are the CSF results. How significant are these in relation to MS?
trocedure Ref Range Units
CSF Total Volume 4.0
Clots BE’ Clots Absent
Xanthochram CSF Absent
Tube Plum CSF 4
Color CSF Colorless
Appear CSF Clear
WEC C5F 6 H 0-5 /nim3
RBC CSF 0 0—0
Polys CSF 0 0-6
Lymph CSF 94 H 4080
Histio/Mono CSF 6 L 15—45
Irtrp BE’ See corrunent *
CSV’ Protein 16 15—50 mg/dL
CSF Glucose 62. 40—70 mg/dL
11/18/09 14:20:00 Intrp SF:
No significant inflammatory exudate and no cytologic atypia.
Multiple Sclerosis Comp Panel
Immunoglobulin Q, Serum 1230 mg/cit [768—1632]
Inimunoglobulin G, CSF 2-1 mg/cit (0.0—6.0]
Albumin, Serutu (Neph) 4460 mg/cit [3500-5200)
Albumin, CSF 8 mg/cit (0—35]
Albumin Index 1.8 ratio [0.0-9.0)
CSF Ig Synthesis Rate 1.0 mg/cit [0.0-8.0)
tgG Index H 0.95 ratio [0.28—0.663
CSF IgG/Albumin Ratio H 0.26 ratio (0.09-0.25)
CSF Oligcolonal. Bands Positive [NEG]
Myelin Basic Protein 0,45 ng/ml (0.00—1.10)
Interpretation
Increased concentrations of IgG in the CS? is an
important indicator for MS but may also be associated
with increased permeability of the blood—CS? barrier,
or increased local production cf IgG, or both.
Increased IgG production is demonstrated by an
increased CS? IgG/Albumin ratio, IgG Index and IgG
synthesis rate.
As compared to the serum, isoelectric focusing/
irnmunofixation reveals 10 IgG band(s) that is Care)
unique to the CSE This is consistent with intrathecal
synthesis of iismutoglobulin and is considered to be a
positive result for the oligoclonal bands. Oligoclonal
bands are present in over 90% of patients with MS but
may also be present in CSF from patients with viral or
bacterial meningeoencephalitis, SSPE, neutosyphilis,
Guillain—Barre syndrome, and meningeal carcinomatosis.
hi,
i talked to my neurologist's secretary today and asked her to read the csf results over the phone. i think i will get a faxed copy instead. this is what she said was standing out but i can't find any info on it.
histio/mono: 6 she said normal range was 15-45
CSF lymph: 94 she said normal range was 40-80
i am being referred to an ms specialist at virginia mason in seattle.
any ideas about the csf? thanks!
hi and welcome back!
First, let me tell you how sorry I am that you join our ranks of the diagnosed, but its not the worst disease to have. MS treatment has come a long way in the past 15 years, and most of us will continue to lead a normal lifestyle for a long, long time. If you have questions about this, please be sure to speak up.
As for the migraines, there is nothing that says even though you have MS you can't have some other problem too. The migraines may very well be a totally separate problem.
I'm sorry to hear the LP was botched twice - once losing the samples, and the second one resulting in you needing the blood patch.But its good that you went through with this test to support the other evidence.
Now you can get on with treating your MS.
be well,
Lulu
Well, I had a lumbar puncture two weeks ago. The lab lost the fluid and it had to be re-done last Wednesday. Unfortunately, I had a major spinal headache (even worse than my migraines) and had to have a blood patch. Had another migraine last night. They seem to be getting closer together as I usually have severe migraines only once or twice per year...I have had 4 or 5 since August. Today the Neurologist called to tell me my spinal fluid tested positive. He said with the lesions and the elevated something or other in my spinal fluid that I probably have MS or something closely related to it. He is confused about the migraines though and says that migraines are not usually associated with MS.. Are there other closely related conditions that do present with severe migraines?
Hi there and welcome. I know it's so hard to wait, but this doctor does seem to be trying every avenue to reach a diagnosis. Please just hang in there (or here) as this process unfolds.
I'm curious about your MedHelp name. Are you a 'humble captain's daughter' as in the wonderful Gilbert and Sullivan operetta, HMS Pinafore? I've loved that all my life.
ess
update: my neuro explained my mri results the other day and says he doesn't think i have ms but doesn't feel comfortable moving on. he finds a lesion in the splenium of the corpus callosum very disturbing and says he only sees it in this location 4 times per year. yesterday i had a lumbar puncture. waiting for results. he really doesn't like the location of this lesion and kept calling it "disturbing"....but if it is not ms, then what?
One thing I have heard over the years since I have been diagnosed with MS, that MS lesions love the corpus callosum area. I happen to have a large number of lesions in that area.
Let your doctor continue to do his work up. He's doing a great job of looking for all the possibilities....alot more than I can say for the majority of doctor's that our members talk about.
If you haven't had an MRI using MS Protocol of the thoracic area of the spine, this is probably one test he will order. Please do not go to him and demand another MRI for this. You may suggest somewhere in your visits with him, if an MRI needs to be done to look for lesions in the thoracic spine. This is a very common area for MS lesions, although they also appear in the cervical spine.
Your doctor is on the right road. Patience is going to be the key here. Trust me when I tell you that your doctor IS doing all the right things....
Welcome to the Forum and please stick around.
All the Best,
Heather
I just wish I knew one way or the other! Are the lesions ms or not!?? So frustrating. If my bloodwork is normal I'm assuming that means there are probably no other diseases causing the lesions. Can someone have lesions in my locations and not have ms? Is there such thing as lesions there that are just a fluke and aren't harmful? I don't have another appt with the neuro until the 27th. Thinking of finding an ms specialist to talk to.
Hi
thanks for all of the comments! I got my cervical MRI results today that say there are no definite lesions in the cervical spine. Bloodwork came back normal.
hi there,
i am 30 yrs of age,
and in march this year they talked about MS, i have been having syntoms for 13 yrs,
I go and see specialist again in november, as things have gotten worse,
the best advise i can give you, is no matter what they tell you, you have to enjoy life, have a cry, get angry, but tell with all your might to enjoy, my specialist gave me this advise, and i finally got up off my bottom and did things that i didnt think i could,
good luck, we are all hear for you
WOW,
I would like to have your doctor..a doctor that does not blame it on migraines....I have had an abnormal MRI with similair findings of lesions and my doc says migraines..
I have not been diagnosed with MS and came across this site while trying to figure out what a T2 and hyperintensity was...I have learned alot here and have gotten great support and advice
Best Wishes to you.
jibjen
Welcome to the forum, Lulu answered pretty well what you needed to hear.. and I just wanted to say it sounds like you have a Dr that is going to work with you to give you the answers you need.
Hope things get answered soon.. let us know how thing progress
take care
wobbly
dx
Hi cptsdaughtr (are you one?), welcome to our forum here at medhelp. I hope you will find the information here useful to you on this new journey.
There is very useful information in our health pages (yellow icon, upper right side of this page) about this disease and the diagnostic road that you would benefit from reading them as a primer.
The cervical MRI is to look for additional lesions. The extensive blood work is to rule out other mimics of MS (also a great health page on this!) - things like Lupus, Sjorgen's, Lyme disease, and sarcodoisis can also present like MS. There are a bunch others too.
The most important thing here is to learn all you can stand to process and be prepared to be an active participant in discussions with your neurologist. But whatever you do, don't ever tell him you are researching on the internet - that's one thing most doctors don't like us doing.
I hope you will come through here often and lean on us with your questions and any other support you might need. This is a great group of people, with a lot of knowledge and a great desire to help any and everyone who comes here.
There is a certain ironic twist in your diagnostic process that I have to point out - we have had a rash of people here lately who have been told their lesions and symptoms were being caused by migraines (and most of their pictures really don't fit that explanation) and then here you are with migraines, and being told no, its really MS.. This rambling may not make much sense to you, but it will to our community members. If you stick around long you will also understand this.
Welcome again! I'll look for you around.
Lulu
I'm sorry to hear about your abnormal findings. I hope that someone here will answer you soon. If it is MS I can tell you your are better to find out sooner then later because many of us have been waiting a long time to get a diagnosis. I will be 35 soon and I've had symptoms now for 2yrs.
You will probably have some more testing done, be patient and ask lots of questions on this forum we have alot of great knowledgeable people here to help you.
Shelley