A naive question from an exasperated patient!
 

Hello everybody.

I have been over on the MG forum for a while talking about chronic undiagnosed symptoms including slurred speech, walking difficulties with frequent falls, blurred vision, difficulty supporting the weight of my head, difficulty chewing and swallowing and difficulties breathing. To cut a long story short I have been thoroughly tested and the doctors can't find anything and I have been told my illness is 'functional'.

I had two MRIs just over a year apart at the beginning of my last major flare up in 2010/2011 and between the two appeared a 'high signal white dot' on the right frontal lobe of my brain. I was told this is an aging spot and everybody gets them. However, I have since come across conflicting views about this including one GP who told me this could indicate MS.

Can you reassure me this is a normal aging spot and that I do not need to recall for another MRI? I am frequently mistaken for having MS. Of course, I am also very exasperated at not having a diagnosis or any treatment plan.

Thank you very much for reading and putting up with such an ignorant question - I'm sure you must get this one all the time!

wild_cat

Hello and welcome Wildcat.:)

First of all, I would not only get another reading of your MRI or
a new one but, while you're at it, a new Doc..:D
Is your Doc a Neuro?

Good luck and please let us know what happens.:hug:

How frustrating for you. I'm sorry you are experiencing all of this and yet don't have any answers from you physician(s).

First of all, it is not an ignorant question in any way.

I can't reassure you that the spot that was seen is from normal aging. I have never heard of this occurring but I'm a patient not a medical professional. I do know that lesions can happen in other diseases, from viruses, migraines, and head traumas.

You mentioned that you hang out in the MG forum. Did the doctor(s) rule out MG? What types of specialists have you seen?

Sometimes it takes a long time to get a diagnosis of not only MS but other conditions as well. Something isn't quite right and from what you have told us so far, IMO, it doesn't sound "functional."

Hang in there and let us know what happens and how you are doing. :hug::hug:

Thank you for your responses! It means so much to have your support!

I'm not under the care of a neuro at the moment, but I have now seen four. I have also seen three cardiologists, as my heart range is very wide (30s-180+). They recently gave me an EMG and pulmonary function testing. The EMG was normal even though the test itself made my limbs go into a violent uncontrollable spasm. They told me the pulmonary function test results are 'uninterpretable' and will not redo them.

Up until recently it seemed possible my symptoms may fit an seronegative MG pattern. But I do get other symptoms, such as muscle jerking that doesn't seem to fit. More recently I started to get bouts of uncontrollable crying which is completely uncharacteristic for me. It comes on suddenly for no reason and is a really loud sort of crying, not the sort I would do if I were really crying. Then it stops suddenly and I feel fine again. The last time this happened my eyes went crossed and I couldn't stop them doing it and it was very uncomfortable. I'm convinced that whatever this is is something to do with all the other symptoms.

I find the fact that this happens really worrying. Since it started no physician has been able to take my bp because I get really bad carpopedal spasm and then my face goes into a grimace...it's just horrible as I have no control over it at all. I don't understand what's happening to me and why my body is behaving this way.

Maybe asking for a referral to an MS specialist would be helpful. In the mean time, gather up all your medical records from all the places you have been and for all the tests that you have had done. This is not only for your records but to give a copy to any specialist you see. Also, if you can, keep a log of your symptoms.

I am sure the physicians must know something is up. The next time you go in to the dr. bring someone with you, someone who has seen some of the symptoms you are experiencing. Sometimes those close to us see more than we think. At least that has been my experience.

Have you seen your actual MRI reports? My first neuro mistook the abnormalities in mine to be small strokes, on the MRI report it stated clearly " given the location a demyelinating process is not entirely excluded "

A repeat MRI of the brain later stated they were " consistent with a clinical history of MS "

Welcome, wild_cat! What kind of critter is your avatar?

About the crying - look into PBA (Pseudobulbar Affect). I'm not saying it is difinitive of MS (nothing is) but many of us experience it. It is a treatable symptom.

If you need financial assistance with another MRI, check out this MS Association of America program: http://www.msassociation.org/programs/mri/.

Good luck to you!

Oh...one of my very early symptoms (assumed, not documented, years before anything was wrong enough to seek treatment) was that, one day only, my neck would not support my head. Interesting, and not fun.

Thank you so much for your replies!

Sparky, my avatar is the Scottish wild cat -- they're quite rare and timid animals so it's not often you'd see them. I'm so relieved to hear that the crying is a symptom with these kind of things -- I thought I might actually just be losing my mind completely!!!

I am based in the UK so I'm not sure whether there would be any equivalent financial support for another MRI. My GP won't re-refer me for anything now. They said they will not do any further tests.

I have another question though: Do symptoms fluctuate with MS? My speech can be different from one minute to the next. It's worst when I'm standing up, moving about or doing anything physical and generally returns to normal after a sitting a while with my feet raised. Does that sound at all familiar or not?

Have you been checked for pseudobulbar palsy?

Oh boy, do symptoms fluctuate! :Trapeze 2: Oh yeah. They can. Doesn't happen to everyone but to those who experience it, it's a roller coaster.