11 years waiting for a diagnosis. I knew this day would come

[Leven]

The reason I'm here, for support I guess, I'm kinda' starting from scratch.
My name is Dirk, my username is the Dutch word for "Life".

Just had my 3'rd MRI & this time they found it. 4'th quadrant, 11x3mm demyelinating plaque.

I'm scared, but only 'cause I don't have all the facts. As this diagnosis is recent, although no real surprise, I havn't been back to my specialist for the follow up appointment to go over the scans. That's on the 20'th Dec'.
Can someone here explain in layman terms what a Solitary linear T2 FLAIR hyperintensity translates to? Found in the left periventricular white matter.
I took the time to google it, but got lost in the mass of info.

Not knowing what stage my MS is at, although others here may know better, I'm quietly optimistic about my future.
In late '06 I developed optic neuritis in my left eye. Slowly went blind & regained sight over 13 weeks. Methyl pred via IV for a week, & an MRI that showed nothing.
Then in 2008 my right eye did the same. More IV methyl' & another MRI but again no plaques.

It's left me alone for a while now, but about 3 years ago I was diagnosed with Ceolicas disease. It's taken me a while to come to full terms with the mandatory diet change, & I've quite often failed by mistakenly eating the wrong stuff or not reading ingredients first. I'm now leaning towards the theory that my MS, being an immune disorder, has been aggravated by the poor diet.
In the past 4 months I've had neuropathy on my right side, I've dropped about 25kg from a healthy 85, & suffering fatigue, aches & pains & such. Plus my right eye clouded over for a couple weeks. That's what prompted the latest MRI.

Some days are better than others though. I enjoy battling on though, glad I still can.
I recall seeing MS ad's on tv as a kid. Never thought I'd develop it.
It manifests in strange ways too. My short term memory is shot, my typing skills have dropped & always make errors, I'm very sensitive to pain & cold temperatures too...what's up with that?

& please don't take anything I say the wrong way. I fear with my imbalanced brain chemicals I sometimes jump the gun, I get agro over silly stuff, & I find I have trouble communicating with people sometimes, kinda' lost in translation type deal. I've had recent numerous arguments with staff at my local supermarket. Sometimes I don't know if it's an imbalance or if I'm just being a cranky bastard.

[lyndacarol]

The reason I'm here, for support I guess, I'm kinda' starting from scratch.
My name is Dirk, my username is the Dutch word for "Life".
...
I'm scared, but only 'cause I don't have all the facts. As this diagnosis is recent, although no real surprise, I havn't been back to my specialist for the follow up appointment to go over the scans. That's on the 20'th Dec'.
Can someone here explain in layman terms....

Not knowing what stage my MS is at, although others here may know better, I'm quietly optimistic about my future.
In late '06 I developed optic neuritis in my left eye. Slowly went blind & regained sight over 13 weeks. Methyl pred via IV for a week, & an MRI that showed nothing.
Then in 2008 my right eye did the same. More IV methyl' & another MRI but again no plaques....

Welcome to ThisIsMS, Dirk (Leven).

I am not qualified to help you with your MRI terminology; I have no medical background, but I hope you are open to other comments.

If you have not had a vitamin D blood test called the "25-Hydroxy D," please ask your GP (or even the doctor you see on December 20) to order it for you, in view of the following articles:

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.


Factors associated with recovery from acute optic neuritis in patients with multiple sclerosis. (2014)
Malik
http://www.ncbi.nlm.nih.gov/pubmed/24850491

CONCLUSION:
Vitamin D levels affect AON severity, whereas younger age, attack severity, and male sex affect AON recovery. Underlying mechanisms and potential therapeutic targets may identify new measures to mitigate disability accrual in MS.


In my opinion, not every symptom must have the same cause. Since many of your symptoms are also common to nutrient deficiencies, it seems logical to me to rule out those possibilities, starting with the vitamin D test; ask for your own copy of the test results so that you have the actual numbers. The California-based group, GrassrootsHealth (http://www.grassrootshealth.net), recommends a vitamin D serum level of at least 40-60 ng/mL.

[Leven]

Yes unfortunately the ceoliacs has taken a toll. I know I'm basically responsible for that (eating wrong) but it's not made easy with package labeling & ingredients that require a code book to decipher!
I've cleaned my act up though, I even use a separate toaster than my family, but some damage has been done to my gut already, so I hope with a better diet moving forwards that I will gain some weight.

As I'm yet to have the follow up appointment with my specialist, he did also arrange for a full bloods work up, so he's on to it. He did mention Folate at one point which I know is for bone strength.

As for the interpretation of my scans, I'm not too worried. I know what they've found, just not sure on life outcomes. We tend to get lost in the technical details, I think though that the T2 flair refers to the type of scan used. I know that cerebral fluid looks white on an MRI too so I think this is how they isolate any trouble spots of plaque. Trying to isolate the cause in my case won't take a genius, as I've had all the hall marks signs leading to this point. There's no doubt in my mind it's MS. (LOL...no pun intended)

Thanks for responding lyndacarol. It's nice to chat with those who are familiar.

[Snoopy]

Hello Leven,

You have already assumed and diagnosed yourself with MS, maybe you have MS but maybe you don't. It's best to let your Neurologist determine this. The MRI report is not a diagnosis and findings on MRIs can have different causes.

Have patience and wait for your appointment on Dec.20th.

[lyndacarol]

Yes unfortunately the ceoliacs has taken a toll. I know I'm basically responsible for that (eating wrong) but it's not made easy with package labeling & ingredients that require a code book to decipher!
I've cleaned my act up though, I even use a separate toaster than my family, but some damage has been done to my gut already, so I hope with a better diet moving forwards that I will gain some weight.

As I'm yet to have the follow up appointment with my specialist, he did also arrange for a full bloods work up, so he's on to it. He did mention Folate at one point which I know is for bone strength.

As I understand celiac disease, ingesting wheat/gluten damages the villi, widens the tight junctions in the endothelium of the intestines, and allows large proteins to enter the bloodstream.

Dr. Cedric Garland, at UC San Diego, in his model, DINOMIT, for cancer proposes that low levels of vitamin D3 allow the Disjunction (Decoupling) of the cells of the endothelium and widening of the tight junctions. (Colon cancer: the endothelium of the large intestine; Bladder cancer: the endothelium of the bladder;…) – Vit D prevents decoupling, which is first stage of cancer.

Vitamin D: Role in Preventing Cancer (55 mins.) 6/2010
Dr. Cedric F Garland


"The most important ones are the tight junctions. These are under the control of vitamin D. When vitamin D levels drop, these disappear. People thought, "oh what happened to them?" Well, actually, they're endocytosed, just like landing gear on aircraft. They sit here, but they're just not there. The cells begin to drift apart and lose communication."

In my unscientific mind, I wonder if people with celiac disease have low vitamin D levels (IMO, another reason to get the blood test) AND I wonder if raising the serum vitamin D level would improve celiac disease symptoms.

I hope your specialist has included the "25-Hydroxy D" test in your blood workup.

[Leven]

Hello Leven,

You have already assumed and diagnosed yourself with MS, maybe you have MS but maybe you don't. It's best to let your Neurologist determine this. The MRI report is not a diagnosis and findings on MRIs can have different causes.

Have patience and wait for your appointment on Dec.20th.

Sorry did you not read the part about my having 2 separate bouts of O N, & the fact the report states visible demyl' plaque?.....that combined with neuropathy & the presence of oligoclonal bands in my CSF , there shouldn't be any doubt in anyones mind. MRI's & spinal taps don't lie.

Over time I've learnt to take the bull by the horns, no one helps you unless you're the squeaky wheel. I wish to christ someone had suggested a diet change in 2006, it would've been long overdue even then as I believe I've had food allergies all my life. Leaky gut has caused my MS, doesn't take a specialist to figure that out.

I reckon most doctors & specialists are just there to serve as drug company retailers. I'm learning shit now that's been on the web for years & not 1 doctor has said BOO about any of it, vitamins, diet change etc, all they've done is treat the symptoms & then forget about me.
Treated as such a non event was I, that I was almost convinced the MS would leave me alone. Now I understand the signs that were shown me back then.
Barley sugar lollies made me sick as a kid. 20 years later I realize why. My gut has slowly eroded to what it is today, & the uptake of the wrong proteins has set MS in motion.

Thought I might actually gain some knowledge by coming here...?
Is there even a Neuro specialist on the members list here? Would seem highly appropriate to have qualified input on such a forum.

[Leven]

As I understand celiac disease, ingesting wheat/gluten damages the villi, widens the tight junctions in the endothelium of the intestines, and allows large proteins to enter the bloodstream.
... AND I wonder if raising the serum vitamin D level would improve celiac disease symptoms.

I hope your specialist has included the "25-Hydroxy D" test in your blood workup.

From what I've learnt in just the past few days, yes, the celiacs has caused my gut to take up proteins it would otherwise not. Animal proteins mainly. This causes the immune system to react, hunt out the foreigners & attack. Problem there is that our bodies naturally contain the same or similar proteins (myelin is one)

I have also started on a daily multi vitamin, & some vitamin C just cause they taste good!

I'll check back with more info after the 20'th

[jimmylegs]

hey there. knowing it had been some time since i posted much about things celiac-related, ran a search.
only three pages of relevant posts! lucky you
the first post at the search results link below is recent, but isn't terribly relevant for you.
the one previous and all the rest of the posts (at least in the first page of results) should contain potentially interesting and useful reading
enjoy! and feel free to ask for any clarification if needed. i think the general drift will be pretty clear lol
http://bit.ly/2gAHZ7z

[Kiyaan]

Hey Leven,

I think - and I'm not a neurologist - that the collection of test results pointing to demyelination on your MRI, dissemination in time (two bouts of optic neuritis), and the fact that you presented with optic neuritis strongly implicates MS (as you have surmised yourself); that doesn't really guarantee that you have MS, and to be frank, I don't even know if actually being diagnosed with MS really guarantees that you (or the rest of us for that matter) have 'MS'. The reason I say that is the fact that the disease course is so heterogeneous that it's virtually impossible for the doctors to tell you anything of prognostic value. We don't really know how the disease starts, what causes it etc. also different people seem to respond differently to different drugs. What I'm trying to get across is that I'm not convinced that 'MS' as it has been diagnosed is really one disease, and the point I'm trying to make is that I don't really think the title really means that much any way.

What I've found is that most people diagnosed with 'MS' will do anything and everything to try and stay well; hellminth worms to dietary changes - you name it, we'll have tried it, all in a bid to beat something that we don't truly know. So, in the end, at a philosophical level anyway, I don't think the label matters all that much, or at least, it's not as important as the will to fight and stay well.

That said, going by what I've read, if it is 'MS' that you have, then you're probably more fortunate than the average patient. You've gone 11 years and you've had two relapses that you seem to have recovered from, and no motor involvement (and this is all without any medical intervention I assume). Your MRI only shows one lesion which is again "good news". Keep in mind, the data I have read is in dispute simply because there hasn't been enough data collected, so whatever pattern that is noticed in a clinical or research setting may just be an artifact of the data set. The consensus used to be that being female, having less disability in the beginning stages of the disease, the amount of recovery, the absence of motor issues, and the absence of bowel issues all predict a better outcome, but when I speak to some other neurologists they basically tell me that there isn't strong support for any of those conclusions. And that brings me to your comment of "taking the bull by the horn" and what I what I thought I could add to this conversation.

I was, and still am, very much of the same mentality. I don't want to be surprised. I want to face whatever is coming face on. And that has been my main challenge with MS - tolerating the uncertainty. I feel that's probably the toughest aspect of having MS -for me- and I've had a tough time learning to just let go when I can't do more. If you're anything like me, it might do you a whole lotta good to try and deal with that part of the whole experience. In any case, I wish you good luck, and, good health.

[Leven]

The link below will take you MSonedrive cloud server. My MRI image.
https://1drv.ms/i/s!AuAKxSAuooBZhVOEPMGUBxQDVMOR

No new news as yet, things move slowly in this state & being referred to a neurologist will likely take a few weeks.
So it's just the one spot I'm told, easily seen at the rear of my brain, although I will question the specialist on the smaller white spot in the brain centre. There's one other anomaly I'll question too & that being a black void of sorts against my upper spinal cord.https://1drv.ms/i/s!AuAKxSAuooBZhVXamdW1Qo8HkRLD

All the blood tests came back as normal, which was a bit surprising, still forgot to ask which ones they did specifically but I'll follow up on that.
No alarm bells went off though, other than my still losing weight slowly...mmm

No-one really wants to use the M word just yet, but my GP looked me in the eye, nodded & whispered...yes, most likely MS.

Still, I'm loving everyday though guys. Getting out of bed is a slower process but I'm thankful I can. Getting into my vege' gardening too which is very fulfilling..

[Snoopy]

I havn't been back to my specialist for the follow up appointment to go over the scans. That's on the 20'th Dec'.

No new news as yet, things move slowly in this state & being referred to a neurologist will likely take a few weeks.

Didn't you have your appointment with the specialist on the 20th?

I don't know what the black spot is on the spine MRI but I do know it's not a MS lesion. Lesions on the spinal cord are not black holes nor do they turn into a black hole in that area. Brain MRIs can show black holes which is where a lesion was and indicates permanent axon damage, but that is not the case with the spinal cord.