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Getting Married...and Diagnosed

Hi all,

Brand new to this website, but not to MS research unfortunately. The main reason for my post is to wrap my head around this whole diagnosis process and to maybe find some advice in the meantime. My story is as follows (please bear with me…)

Late January 2017: Woke up one morning feeling “foggy” and fatigued; felt almost as if I was having a really bad allergic reaction to the weather which I get sometimes in the early spring before it rains (feeling heavy, difficulty concentrating, feeling “dream-like”, pain in temples). This fogginess lasted a couple weeks and then began getting worse. I was having difficulty concentrating at work, could not remember the simplest things at my job and couldn’t hold or remember a conversation.

Early February 2017: Speech, fine/gross manipulation and leg issues began; I started to slur my words, could not think of the appropriate word to say in a conversation, was unable to firmly hold onto objects, dropping things easily and my legs were SO heavy. They felt like lead; As I was wedding dress shopping, the backs of my legs right underneath my buttocks in my upper hamstrings starting feeling so weak that I had to sit down or I was afraid they were just going to give out from underneath me. It is not necessarily a burning pain (thankfully), but I feel a constant weakness and discomfort whether I’m sitting or walking. I also began sleeping 10-12 hours a night and still woke up severely fatigued.

Middle February 2017: Went to the ER one night because of the leg weakness; negative CT scan and negative brain MRI. Followed up with a retina specialist that could not find any signs of optic neuritis. Met with neuro that said my physical exam was grossly normal: (-) Hoffman’s, Babinskis and Romberg’s with normal strength and sensation w/exception of no vibratory sense in my right big toe. I began having pins and needles in both feet and trouble typing in both hands; sluggish and slow. However, I STILL could not shake the fatigue or brain fog.

Beginning of March 2017: All physical symptoms faded away, but the mental clarify issues remained. Every single day, I experience that constant “brain fog” and to a lesser extent, the mental and physical fatigue. Both my cervical and thoracic spine MRIs were (-) but all were done on a 1.5T.

Since March, I have not had a single day of relief from this fogginess. I have since seen an immunologist, endocrinologist, ID specialist, cardiologist, ENT specialist and allergist. ALL findings and blood work have come back normal.

I see an MS specialst in NYC at the TISCH MS research center who said he doesn’t feel the need for an LP and doesn’t think it’s MS based on the clear MRIs and totality of the symptom picture. He did, however, provide me with a script for another brain MRI to see if anything else has popped up.

***My questions are threefold:

  1. Has anyone had the experience of having all three MRIs done on a 1.5T and then having repeat MRIs on a 3T with different results? Basically, did the 3T find something that the 1.5 did not which lead to a diagnosis?

  2. Since I have had lasting symptoms (brain fog and fatigue), if I have MS, am I more likely to have PPMS rather than RRMS?

  3. Has anyone had success with any medications (MS-only meds or others) that have helped with the fogginess? My GP has suggested either Adderall or depression medication (Wellbutrin or Cymbalta), but I am hesitant to do so.

The last question is more of an opinion question because I need guidance from people who can empathise with my position rather than sympathise… I am engaged and our wedding is scheduled for 10/2017. My fiance loves me and he says he wants to marry me regardless of a diagnosis. But I just can’t do it…I just can’t seemingly commit him to a possible lifetime of care-giving and of the unknown (if this is actually MS). I know the disease progression is different for everyone, but I just think I would feel so guilty going into this knowing this is a very real possibility. He is considerably younger than me and I just feel like he can rebuild and start over even if I can’t. I love him enough to let him go for his own sake. I don’t know if I should go through with the repeat MRI in September (on a 3T) and risk the chance of finding something and then cancelling the wedding…or if I should wait until after the wedding in November and take things from there. I just need to know that this feeling of hopelessness is not uncommon.

Thank you for your time.

Hiya,

In the UK nearly all MRI machines are 1.5 Tesla.

We used to have a lovely Lady on here called Rizzo and she was the font of knowledge and had a PHD on MRI’s. This email I received from her will tell you why sometimes lesions do not show.

The last T2 FLAIR scan I did of my brain used 70 slices (on a 3T scanner). The one I had done today - 13 (on a 1.5T scanner). THIRTEEN. THIRTEEN!!!

Thankfully I wrote it out the voxels/T2 reply in Word before posting - to avoid the dreaded time-out! So here it is…

A MRI image typically consists of voxels (3D pixels). Slice thickness is one dimension (on the z-axis if you think of maths). The images you see on the CD show you the other two dimensions (on the x- and y-axes). You can set the voxel size to anything you want, in any dimension; all that happens is that it changes the time the scan takes to run (and therefore, of course, how much it costs). The smallest voxel size used in everyday MRI is typically 1mm x 1mm x 1mm. The “off the shelf” scan that I used to use for this size of voxel had 176 slices. The voxels (and slices) cover the whole brain irrespective of what the voxel size is – nothing is missed out (but see later).

If a standard T2 sequence is used for the scan, white matter gives off a poor signal and shows up as dark whereas lesions (which are full of fluid) give a strong signal and show up as bright.

However, the brightness of a voxel depends on the average of the response from the matter represented by that voxel. So a voxel that is 1mm x 1mm x 4mm will show the signal generated by all matter located in that 4mm3 cube. That is, if the voxel only contains white matter it will be dark in the image, if it only contains fluid it will be bright, but if it contains a mix of white matter and fluid it will look somewhere between dark and bright, depending on the proportion of the different matter types.

So if you have a large voxel (say 4x4x4) and a small lesion (say 1x1x1), the overall signal in the voxel will only be slightly higher than one without a lesion (and therefore look only slightly brighter, and therefore may be overlooked). [NB Small lesions would also not always be completely contained within one large voxel – it is more likely that it would be partially in at least two. So this makes it worse.]

But if you have small voxels and a large lesion, then you will get several very bright voxels (where the matter is all fluid), some intermediate voxels (where there is a mix of fluid and white matter), and some vaguely brighter voxels (that contain predominantly white matter).

In other words, small voxels are much better for detecting lesions.

So, can lesions be missed if you use thick slices? Basically, yes. It is entirely feasible. However, they would have to be much smaller than the slice thickness because if they are closer in size, they would contribute sufficient signal to make the voxels significantly brighter than the surrounding voxels and would (should!) be picked up by a decent radiologist. Saying that, it is possible that it might be missed if a small lesion, by chance, spans lots of voxels (e.g. if it is centred on where four voxels meet on that slice) and the signal is lost by the averaging with the white matter signal in those voxels.

However, there are new “pulse sequences” (the settings that programme the scanner) that are particularly sensitive to fluid. If you use one of these rather than a standard T2 sequence, you will be able to use bigger voxels and still be able to detect lesions relatively easily. And the power of the scanner makes a big difference too. A 3T scanner is much better than a 1.5T scanner.

So, if a hospital has a 1.5T scanner and a neuro is ordering a standard T2 scan, then he should be asking for a high resolution (i.e. small voxel size).

If the hospital has a 3T scanner and the neuro is ordering a FLAIR or another new type of pulse sequence that’s good for fluid, then he can get away with a lower resolution.

[NB A related point: it is possible to set gaps between slices. For example, the MRI may capture signal from 0-4mm, 8-12mm, 16-20mm etc rather than 0-4mm, 4-8mm, 8-12mm etc. This would DEFINITELY miss lesions!]

So the trick to not missing lesions is not so much about the number of slices, but about the voxel size, whether or not the slices cover the whole brain without any gaps, the power of the scanner and the choice of pulse sequence.

Me again; I do suggest you read her https://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brief-beginners-guide-brain-and-mri although you sound knowledgeable about the brain.

A lot more anyway than marriage; the guy loves YOU, wants YOU, YOU obviously love him.

Good idea, why don’t you make two people unhappy over something that may never happen!

No you cannot tell what type of MS; if it is; you have yet.

George

Hey Coles,

I will let other more experienced people answer your technical questions regarding MRIs, but I just nonetheless wanted to briefly comment the last section of your message. Marry each other if you love each others, don’t let whatever diagnosis be stronger than love itself, as this would be somehow accepting that some things are stronger than love in life, which I believe is wrong (personal opinion). If I was in love with someone, older or younger, and that person would go through bad times such as yours, never ever would it cross my mind personally to leave the boat and let that person get blown away by the wind alone on whatever land is out there. If your man loves you, as you said he does, then I am sure that he would want to embark in whatever adventure is awaiting for you, as love is a lot about caring for each other unconditionally. Anyway, just wanted to throw a little bright pearl here.

All the best,

Blue Marble

Hi, I have read your stories about MS , iam waiting to see a nurologist this week, im very nervous, I have had several problems over the years a getting worse over time, I have had stabbing pains in my eyes and twice had a blind spot in my right eye, but my eye test was ok, I have had a few what I got tremors thinking theres been an earth quake, after these tremors I felt quiet unwell, a few years ago my face felt numb and I couldn’t get my words out, went to hospital they kept me in over night and said a blip of a stroke nothing to record, I started to get muscle spasms in my back and legs, I get severe problems with my legs and feet , numbness in my left leg and tingling and numbness in my feet and hands, I get what I call a jumping nerves like a chopping feeling throughout my legs with a stinging feelings its really horrible, I wake up and feel so tired and get a lot of dizzy spells , I forget things easily, I have trouble with incontinence, often cant make it to the toilet, for the last few years my bowels movements are never solid, this has been happening to me over a few years just getting worse , im scared to got ths week , do you think it could be MS Regards Shaz

Hi Shaz58

you’ve posted on the end of another post - copy and paste your query on to a new thread as you will get more response.

However, no-one on here can say if you have MS or not. Your neuro will likely order an MRI and other tests as well as taking your medical history, so you can help by keeping a detailed diary of your symptoms: when they started, severity, how long they last, any over the counter meds you have taken and if they helped, what you were doing before they started (e.g. if you had aching muscles and had been to the gym the day before), and so on. You could print off your post above if that helps.

Write down any questions you have and if you can, take someone with you who can act as an extra pair of ears, as you may well not take in what is being said.

One other observation that has been discussed before on the forum is that many neuro’s come across as abrupt and patients feel dismissed when he/she doesn’t appear to listen to them. If this happens, try not to take it personally, the neuro is not there to hold your hand or make you feel better, rather view him as a detective tracking down the culprit.

Not long to wait till your appointment, try to keep calm and remember to look after yourself and rest as much as you can.

Oh, and don’t expect answers at your initial appointment, it’s a long road to diagnosis. Good luck.

Thankyou, im not good on computers Shaz58