Advice appreciated on tests

New diagnosis and before diagnosis
1

Hello

I have a couple of questions if anybody could possibly answer them please

I have posted on this forum in the past but for some reason, cannot find the thread, I may have accidentally deleted it, I cannot remember, apologies if so (brain mush!)

I will try to be very brief: I am a mid-40s woman, diagnosis of fibromyalgia but symptoms have been mainly neurological, dizziness, unsteadiness, tingling, visual disturbance, dreadful fatigue, so bad that I quit work, creeping flesh feelings ,sunburnt skin, now got double vision on looking left. I have been ill for about 9 years altogether but quite bad for the last 5 years. I think when I saw the neurologist, my general examination was unremarkable but my brain MRI has just come back showing some high signal intensities in the white matter and I am to have a lumbar puncture and a visual evoked potential test. I only received this letter on Saturday so as you can imagine, I have spent a worrying weekend and am feeling really confused and worried. My questions are:

  1. Is the Dr suspecting MS to order these tests??? This question is going round and round in my head all the time, I don’t have access to the MRI report so I don’t know where the lesions are or what the appearances suggest so I am just guessing! Arrrgh (and if it is not MS, I wonder what it could be?)

2)I am due to go on holiday in a few weeks, does anyone know if I can fly after the lumbar puncture or should I wait and have it when I come back? But that is more uncertainty and waiting! I will ring the ward and ask when I get the letter with the date but would like to try and plan things now if possible

3)Also, for example, if a person did have MS but was going through a “quiet phase” with not much disease activity, would the LP still show up positive or be negative? Does the timing of the test matter?

Thanks in advance if anyone can help ease my mind with these questions.

2

Hi ya,

im in diagnosed atm and going through similar, my neuro said my MRI was to see if anything was going on, and it can also eliminate Ms, but it can also show lesions on the brain from other areas of damage that isn’t Ms related, I am sure Ms will show lesion on your brain on a particular section, so maybe the following tests are to eliminate Ms, and also steer you into correct diagnoses…

im not 100% on lumbar puncture on holidays but I’m sure I’ve read that you have to take things easy for 24 hrs after having it done, but I would advise to get this checked out with nurse,

and as for third question I can’t answer I’m afraid, sorry not much help, please try not to worry even though it’s not easy not too.

all the best.

hope you enjoy your holidays

Heidi x

3

Hi, I think there would be no problem travelling after a LP although some people get a sore head. Drinking a lot of caffine drinks can prevent a sore head. I dont think you need to be in a relapse to have the LP as once it is positive I dont think it will ever go back to negative.

The standard tests for MS are MRI, LP and evoked potential tests. Some people dont have a LP and evoked potential if their MRI is conclusive enough on its own for a MS diagnosis. It sounds to me that based on your MRI MS is a possibility but not certain which is why your neuro has ordered those other tests. There are loads of things that can show lesions on MRI that are not MS so dont worry.

Moyna x

4

Thank you both for your responses. I am feeling somewhat calmer today! and I did sleep a bit better last night. Yesterday I was very down and a bit tearful after the shock of the weekend. I am also a bit relieved that “something” has been found in my MRI that might account for all my symptoms and I am not a hypochondriac/malingerer/lazy, etc, that have been put to me over the last couple of years! It might sound odd to be relieved and I REALLY do not want a serious illness but the fact remains that I do feel dreadful and I might at last be getting answers to the problem.

I am going to try not to dwell on things and worry and just await my tests, etc.

5

I think anyone on here can completely understand how you are feeling, the “showing of something” means your not mad…which is a state so many feel x x

good luck Hun

all the best Heidi x

6

Hi i had all this too way back. I paid for my first MRI so i could get back to work (I taught I.T.). I wanted to know why i went blind twice etc and why i was having so many weird things, and also i had a collapse which lasted 6 months…

My first MRI showed the same as yours. I was told on the report it could be demylinisation event (MS), BUT as my age was on the scan 1951, the radiologist said it could be my age, which actually i have found since is a load of rubbish as high signal foci are not aged related…it was just a FOB OFF.

I had lesions on my spine eventually and positive veps for Optical Neuritis, but my LP although showing all the O bands for MS, the blood test alongside showed inflammation so they said the LP was negative…although the neuro then told me it could be the inflammation was coming elsewhere, which it was as I found out later i have a co infection of Lymes and they beleive that is what muddied the LP.

It still took a while to get an MS diagnosis of a private doctor. However on my notes it says MS.

I would go and have your holiday and enjoy it. The LP can wait, you have waited long enough anyway.

I roll my eyes over this Fibromyalgia diagnosis. I know personally so many people with fibromyalgia now, more so then the common cold lol.

The criteria to diagnose Fibromyalgia is this:

Criteria for diagnosing fibromyalgia

In order for fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

  • you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas
  • your symptoms have stayed at a similar level for at least three months
  • no other reason for your symptoms has been found

The extent of the pain used to be assessed by applying gentle pressure to certain “tender points”, where any pain is likely to be at its worst. However, this is less common nowadays.

///////////////

Now it seems they have added everything else on top, oh you feel dizzy, FIBRO. Your have double vision. FIBRO. Your balance is off. FIBRO. You have pins and needles, FIBRO…so on and so forth lol.

Fibro is supposed to be a muscleskeletal disease not a nervous system one, but the more i read the more people are being diagnosed with it who are suffering more neurological symptoms. I often wonder if there is a new disease in town no one has given a name too lol.

Fibro is tender points, on BOTH sides of your body. To have fibro BOTH sides of your body have to be involved.

With MS it is usually one side of your body which is affected. Mine is my left. I do keep some sensory problems on my right but its nothing like my left. My left side is very weak, my right side carries me.

I wouldnt be too scared about a possible diagnosis of MS to be honest as in the grand scheme of things it made no difference to me whatsoever, just vindicated me as i knew i wasnt going nuts, i didnt just stop my fabulous job for nothing lol.

So go enjoy your holiday and then have your LP. It aint going away so you might as well go away enjoy yourself then worry about it all afterwards. x