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Ms l

Hello everyone , i am new to your forum. I hope by posting my questions that one of you can shed some light on my present situation.

About 5 years ago i started to have vague symptoms like pins and needles in different parts of my body and feeling very tired. I was sent to a neurologist who done mri of brain which came back normal. About a year ago i started to get very bad morning headaches which were ongoing, so back to the neuro who just said i had daily migraine and he prescribed topamax for 6 months. I took the topamax and they did help the migraine.

I had a spinal mri sometime in those 5 years and it showed a little abnormality in one of my discs, like narrowing of one area, i'm sorry but i can't remember the exact problem. I am presently waiting for a copy of that report for my own records. The same neuro referred me to a neurosurgeon at the time who said it was fine and that nothing needed to be done for it. Am sorry to if i am confusing anyone but am trying to give the full picture as best as i can.

August of this year it all started with a fullness in my right eye with balance problems. I felt and still do like someone who has had a couple of drinks. It's like i am being pulled to the right side. Went back to the same neuro and when he tested my eyes i could see two on pen test and finger test.  He admitted me to hospital where i had a brain mri, veps, lumbar puncture and lots of blood teats. Before i go any further i just want to mention that i had a brain mri also in February 2014 which was normal, although there is some dispute about that. I will explain as i go along.

I managed to get all my test reports that were carried out in the hospital.

Brain mri - 29-09-2014
No significant periventricular signal changes demonstrated. There are numerous tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm.

There is a tiny punctate sub 2mm lesion identified in the posterior aspect of the corpus callosum.

The orbits and globes appear normal with no significant optic nerve abnormality demonstrated.

The basal ganglia appear clear as is the proximal spinal cord.

conclusion; The number of high signal foci is more than expected for this age group while they could well relate to small vessel ischaemia demyelination would be in the differential.

Lymes negative. Lumbar puncture negative. Coag screen PT, APTT, + INR. Within range. Ena screen Negative. Vep within normal limits.Glucose normal. vitamin B12 normal. Serum folate low. ESR 29 high. ANA 320 high.

Went back to same neuro for results and he said he had his doubts before i had the lumbar puncture that it was ms and that the lumbar puncture confirmed it was not Ms. He said he thinks i had a virus of the inner ear and sent me for vestibular rehab but it didn't help.

I was very frustrated with my neuro when i got hold of my report, and i went to my gp who couldn't say why i'm like this and she agreed with me to get a 2nd opinion. Last week i met a new neuro who ecamined me, looked at all my reports. looked at both MRI's and said he thought he could see some foci in februarys mri they were hard to see. Although the written report is normal. He said the pics were not as good as the mri i had done in September.

He said to me that he was not convinced i had ms but he would have to keep  a very close eye on me. H e is doing a spinal mri in the new year and wants to get a brain mri in march or April 2015. He said my prognosis was good but didn't say what is wrong with me. He said i didn't have stroke or a brain tumor.He wants ANA and ESR blood tests repeated this week.

To be quite honest i feel i am in limbo, don't know what to think or do. I am not getting better and recently i have tilted vision on my laptop mostly and constipation. All i know is there is something wrong and no one can tell me what is wrong.

I am so sorry for this long post but i hope someone can shed some light on my sypmtoms and should i do anything else or just wait for these new MRI's? It's all so frustrating i just wish i knew what is wrong so i can move on, i don't know what to think anymore. Thanks for any enlightment anyone can give.

Best Answer
667078 tn?1316000935
I do not know what your neurologist means. They are real brainy and do not think the way we think. They are real cautious. They like to look at things over time. I thought I was being dismissed until I understood neurologist are their own breed.

Alex
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Avatar universal
Thank you for your reply, yes  i don't know much about it either.

I don't know what is wrong with me but am getting mri with contrast soon and spinal mri, that might give me an answer. Maybe Ms is not what's going on after all.

I hope to find out soon what is wrong with me, a good prognosis is a good thing to be told i suppose, it's all a bit up in the air at the moment. Thanks again for your post and for taking the trouble to search the meaning. Hope you are well.

Best wishes
Lorraine.
Helpful - 0
5112396 tn?1378017983
mm2/s means millimetres squared per second or 'centistrokes'. This is a viscosity measurement. Without an associated number, it doesn't mean a lot, but here's a link to some normal ranges. http://radiopaedia.org/articles/apparent-diffusion-coefficient-1

If you're having difficulty with scanning blocks of text, this is a cut and paste. Some rough useful values (10-6 mm2/s) 8-10:

white matter: 670 - 800
cortical grey matter:  800 - 1000
deep grey matter: 700 - 850
CSF: 3000 - 3400
astrocytoma
Gd II: 1273 ± 293
Gd III: 1067 ± 276
Gd IV: 745 ± 135

"It is considered useful not only for the detection of acute ischaemic stroke but also for the characterization and differentiation of brain tumors and intracranial infections."

So, not typically something we come across in our MS protocol MRIs. I've never seen it before. I did find the site link above very helpful.
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Avatar universal
Hi  j j,

Hope you well. Do you know anything about Apparent Diffusion Coefficient ?
my mri disc has this written on one of it's images. It says (mm?)/s. Would this have anything to do with my lesions?

I searched on the internet but i don't understand it very well. Is it related to anything in particular do you think?

Lorraine x
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Avatar universal
Thanks for your reply Alex.

I'm sure they are very brainy! From my replies on the forum it will take time and i must be patient. My first neuro never told me i had what i have on my brain. All he said was you have a couple of white spots related to your age,and because i am not getting any better, he thought i had a virus of the inner ear

I was lucky i got my reports otherwise i wouldn't have known what i do now..

Lorraine.
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Avatar universal
Thank you Linda for your kindness we will get there in the end i hope!!

Lots of Hugs to you too.

Lorraine.
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11119474 tn?1428702170
Hi Lorraine,
Just know that you are not alone.  I am also in limo awaiting an appointment with the MS Specialists at Vanderbilt and can't be seen until the end of February.  All I can offer are virtual hugs.  ~Linda
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Avatar universal
Thank you so much j j for your detailed reply.

I have various symptons Vision and oraginising anything is so difficult, my son said earlier to me did you nearly fall mum, when i was getting up from cleaning out my fire. I think my main symptom is i've lost all my orgainistion, Everything is hard to concentrate on and i am so clumbsly as well, the best i can describe is all day getting nowhere. It's like i am on another planet i have become so slow, i am very aware of my balance so i try to concentrate hard on not bumping into doors and missing my steps.

You are right something is defiently going on, i can't spell like i used to and i do get mixed up words sometimes, like when you know what you want to say but it comes out with a different letter, Another thing worth mentioning is when this all happened to me in aug of this year, i didn't leave my house for almost 3 months, no energy, no get up and go. I do my shopping now because my husband works away from home. I go around the supermarket with a list and it's like i go to get whats on the list and i end up going around in circles. Something is wrong and i just wish i knew what?

I told the neuro the other day that i felt as if an elastic band was around my right leg, it's like a numb feeling and you have to shake it out.

I know one thing for sure i am not going to wait for another 4 or 5 mths for an answer. i will have to find someone who can figure out what's happening to me.

This is having a major impact on my life and the neuros all scartching their heads while i detoriate. I am really very grateful to you for listening and replying to me with great advice and i wish you well. You have given me lots  of help and i will post you when i find out what is wrong with me.

Best Wishes
Lorraine.
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Hi Lorraine,

I believe you may of looked at an older version of the Mcdonald Criteria, the later 2010 version requires less lesions......."Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time"  

"Dissemination in space, demonstrated by >1T2 lesion in at least two MS typical CNS regions (periventricular, juxtacortical, infratorial, spinal cord);"  

"Dissemination in time, demonstrated by Simultaneous asymptomatic contrast-enhancing and non-enhancing lesions at any time ; OR A new T2 and/or contrast-enhancing lesions(s) on follow-up MRI, irrespective of its timing;"

Note the Mcdonald Criteria doesn't remove the potential of being diagnosed with only a persons 'clinical signs' of lesion damage and prior medical history of a prior attack. OR the MRI picking up both old (non enhancing) and new (enhancing) lesions........See Criteria below

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf

Relapse Remit (RRMS) is the most common type of MS, though if you're saying you've 'never' had relapses and remitting periods, then the alternative would be Primary Progressive (PPMS) which is the rarer type of MS. PPMS doesn't have relapses, it's a slow steady progression but PPMS typically has a very high number of Obands and considering your LP didn't have any, PPMS from my understanding would be quite unlikely.  

The lesion location on the MRI is often more important than size, lesions can shrink, disappear entirely or even become bigger as they develop etc. Size of the lesion becomes more relevant if the location is fairly common eg migraine commonly causes tiny-popcorn-multiple foci, less than 2mm lesions in the periventricular and subcortical areas. Micro bleeds are generally silent and cause no 'clinically' abnormal neurological signs, where as demyalinating lesions (MS) do cause abnormal clinical signs and the body can often shows up the lesion damage, before the MRI finds it.

Your brain MRI picked more than the tiny punctate sub 2mm lesion in the posterior aspect of the corpus callosum......  

"There are numerous tiny deep white matter high signal foci identified in both cerebral hemispheres approx 13 on the right and 5-6 on left. Most numerous in the right frontal region largest measuring 6.6mm. "  

There is definitely something going on but from what you've mentioned experiencing, the MRI results and whilst you haven't specifically mentioned any abnormal clinical neurological findings, i actually suspect MS would be lower on your list of possible's than some of the other autoimmune conditions.

Hang in there, there's more tests to get through before you'll be closer to your answer, and in the mean time try not to focus on any conditions too much, because you don't want to worry about something it may not be.......

Cheers..........JJ      
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Avatar universal
Thank you for your post j j.

I will be getting my ANA and ESR checked again this week.If it is lupus would it be easier to diagnose than Ms?

I'm so frustrated with all that's going with me, espically after getting a 2nd opinion. It's the not knowing that worries me, because i'm in limbo with all these symptoms and no answers.

The mc donald criteria says a lot about lesions and attacks associated with Ms. some people are diagnosed with 9 or more lesions or 1 lesion in any of the 4 areas of the brain like the corpus callosum and 1 attack. I know my lesion is small would the size of a lesion make a difference? And i'm going to do some research on lupus to see if that would cause the changes in my brain mri and the symptoms i am having.

If it is Ms can people have ongoing symptoms without a relapse?
I'm sorry if i am asking too much questions, it's because i think i have MS,while the neuro is not convinced, and says i have a good prognosis whatever that means.! i might just ask to see a neuro who specialises in MS.

Thank you j j for listening and for your feedback hopefully soon i will know what it causing me to feel like this i am a determined to get some clear answer. X

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987762 tn?1331027953
COMMUNITY LEADER
Hi Lorraine,

Off the top of my head, (sorry i'm on my way out the door) the corpus callosum (CC) is associated with MS, there are other causes though i think for your age group and gender MS would be more common BUT the thing is though, ANA and ESR have nothing at all to do with MS, and your ANA is positive and associated with Lupus and your ESR is also positive and associated with inflammation, with positive blood tests things like Lupus, connective tissue disease, sorjounes (sp) will also need further testing as they can mimic MS.

Cheers...........JJ
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Avatar universal
HI there thanks for reply, it sure is frustrating when they can't tell me what is wrong with me. My body feels like a dead weight and memory is geting really bad.

Hopefully i will find out what is wrong with me, all i know is that i feel like i'm suffering on and off for years but this time i don't think i will get any better.

At 44 you want to have some quaility of life. I'm going around like a zombie and finding it hard to do normal stuff like i did before this happened to me.

It's like everything is so slow, all day getting nowhere. Will wait and see what happens but i have a very strong feeling i have Ms.

Lorraine.
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Avatar universal
HI thank you for your reply JJ, i had every blood test done while i was in hospital including lupus and they were all fine, except the ANA and ESR.

Do you know if a lesion in the corpus callosum is associated with other disorders as well as Ms? Also can you have high ANA and ESR with Ms?

Thank You
Lorraine.
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Avatar universal
HI Alex yes they checked for O bands and they were negative. I had the results in 3 weeks. The new neuro wants to repeat mri of brain in 2015 and a spinal mri in January, don't know what to think. What do you think he meant by i have a good prognosis and we have to keep a very close eye on you?

Do you think it's best i stick with this new guy and wait to see what happens?

Thank You for your reply to my post.

Lorraine.
Helpful - 0
667078 tn?1316000935
You probably do not understand why you don't have a a diagnosis by now. Neurologists specialize and not all of them know a lot about diagnosing MS. The way it works to neurologists is it is not MS until they have run enough tests, have ruled everything out and it is MS. Many people with MS have negative LPs. Also did it take awhile for the results of the LP? If they got the results right away chances are they did not do a LP looking for o-bands which is what they look for in MS.


It does sound like they are moving quickly to find answers. I was not hospitalized and my tests were months or years apart. It took two years to get the LP. any MSers LPs come out negative. Mine was positive with 12 o-bands in CSF and not in the blood. It took weeks for the results they hand to send them to the Mayo clinic.
I went through 6 neurologist and it took two years for a  diagnosis. With each neurologist I had to start over with tests. All my tests showed MS from the begining, all the tests to rule out other things were negative and it still took two years.

I had to go to a MS Specialist. It took me months to get an appointment because he was so busy.

Since there is no test that proves MS it is each doctor deciding if it is MS. The researchers do not exactly know what MS is.

It can be a hard illness to treat often you are sent to other specialists. I thought I would be diagnosed and the doctor would get to work fixing all my symptoms. I actually see the neurologist less now that I am diagnosed. He did refer to a pain clinic and that has been a big help.

Alex
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209987 tn?1451935465
The problem with MS is that they have to run every test to make sure it isn't something else.
MS does not show on any tests...they have to rule out everything before they can say MS...which is extremely aggravating for anyone waiting to know.
If ALL tests come back negative, then they will say it is MS...or depression, or anxiety, or...
Hope this helps a bit.
When I run into this sort of thing, I go to my chiropractor. Sometimes he finds things that the doctors don't see. Sometimes a "crack" of the neck or back is all it takes for me to feel right again.
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987762 tn?1331027953
COMMUNITY LEADER
Hi Marian, welcome to our little MS community,

I think those MRI results would put both migraine and MS on your list of 'possible' causes, but your blood test results of ESR 29 high. ANA 320 high would put inflammatory conditions like Lupus on your possible list too.

Your first neuro is totally incorrect, a negative LP does not at all confirm it's not MS, because there is no definitive test for MS. The LP is looking for Obands unique to the serum, 2+ Obands is additional suggestive diagnostic evidence but if the LP doesn't have any or not enough Obands, it basically only means the LP didn't provide any additional suggestive diagnostic evidence.

Keep in mind that the majority of symptoms associated with MS are associated with many other conditions too, MS is still 'suppose' to be a clinical diagnosis. The combination of a patients abnormal neurological clinical signs, symptom type, symptom pattern, their suggestive test evidence (MRI, LP, VEP etc), and when added altogether puts MS at the very top of their list of possible causes.  

At this stage i would say that MS is only one of a few possibilities.....it might be a good idea to get a copy of your (old and recent) neurological reports, visual tests, neurosurgeon report, full blood tests etc too, basically looking for any noted clinically abnormal signs but try not to worry too much about MS because it will probably take a bit of time to work out exactly what's going on.

Cheers............JJ      
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