In limboland

[Moufa]

Hi all,

I have been reading your forum pages for the last few months and I am very grateful for all of the information, which has helped elucidate the nature of MS as well as myths surrounding it and to explain all of the terminology.

I am a 29 year old female and have been experiencing a variety of symptoms which fall into the MS category but could also be attributed to other causes. The most frequent ones are numbness and tingling in two of my left hand fingers and burning sensations in my left foot. I had a possible episode of optic neuritis near a decade ago in my left eye (diagnosis of 'inflammation' made in another country and I didn't pay much attention to the terminology at the time). I experience episodes of what the neurologist described as 'extreme fatigue' for weeks at a time, usually alongside the other symptoms and have been treated for depression several times in the past. I am not sure if this is related or not, but I have also been experiencing postural headaches for months. I tend to lose my balance a lot and this has made me feel nauseous and sick on several occasions over the past few months (and embarassingly falling onto colleagues). I failed to mention this to the neurologist as I stopped looking at my list and it was low on my priorities at the time. I also failed to mention that my left hand has 'intention tremor'  (I only realised it can be a symptom after a lot of intenet reading) but I did mention that I keep getting severe painful cramps in the fingers of this same hand which is making things difficult for me at work some days. I was not sure what to expect as feedback and didn't have MS in mind until a couple of days before the appointment, after talking to a well-meaning medic friend. I also failed to mention that these symptoms (apart from the headaches) seem exacerbated during mediterranean holidays, as again, I didn't realise that this heat-related phenomenon is something MS-sufferers experience (should have done the reading first!!) All this doesn't matter I guess as it is all being currently investigated.

The neurologist has reported back to my GP that he is investigating demyelination although he did not find stong evidence to support this during the neurological exam. The only notable findings were reflexes that are brisk but not pathologically brisk and pallor of the left optic disc. I have been told this in the past as well and at the same time (and for a few years) that my pupil in that left eye dilates slower than the right. My husband used to have fun confrming this! I told the neurologist but he did not find evidence of this. Is this something that can go away over time?
The other possible explanations were Chiari malformation and symptoms due to a migranous process.
I have had a series of blood tests, that I know were all normal as a letter was sent to my GP regarding this. I also had a VEP, which the technician seemed to be pleased about and was happily showing me the peaks that I do not understand (I presume he wouldn't be showing them to me if there was something wrong) and today I had a brain and cervical spine MRI. Prior to the scan I was told that half way through someone would come to assess if I needed a contrast agent. After a sequence of scans I was told that I will be given gadolinium and was told to try to stay completely in the same position whilst they were injecting. Is this a normal part of the procedure or is it only used when the radiologist/radiographer sees a lesion? Do they need a contrast agent to diagnose a Chiari malformation?
I will not know the results until february when I have my next consultation and it feels like a terribly long time to wait.

Could these things not be caused by some more benign cause not mentioned to me? I keep reading that other diseases or conditions have to be ruled out in order to diagnose MS, but  very little on the net about these other conditions, other than the most severe ones. Can anyone think of anything else other than these that would be me normal bloods? And do you think my neurologist would be annoyed if I contacted his secretary in a few weeks asking if he could send me a report on the results? I appreciate that people go undiagnosed for years but at the moment, over two months of waiting seems like a long time when not feeling quite ok. I would be much happier knowing that all the tests are normal sooner rather than later.

Thanks for listening, any feedback would be much appreciated.

Mouf.

[Moufa]

Thank you so much Lulu!

I wasn't expecting  such a quick answer but I now realise most of you guys are in the US and it is earlier in the day for you all!

Yes, I am in the UK. The consultant was the one to suggest Chiari malformation in his letter to my GP alongside demyelination or a 'migranous process'. He told me about it during the consultation without using the medical term at the time and said it can lead to a similar subset of symptoms as well as the head pain that I have been experiencing.

Thanks again and apologies for writing so much in one go! I will keep you posted on my attempt to access the well-hidden test results in a few weeks time.

Best wishes to all

Moufa

[Lulu54]

Hi Moufa, and welcome to our forum here.  I hope you will find it beneficial in many ways and choose to come around often.

You have a lot in your write-up and I'll try to deal with a few points and perhaps someone else will jump in to help.  

I'm assuming that you are in the UK by the terminology you have used - you have consultants and we have doctors.  :-)  If you are on the NHS, the wait until February sounds pretty much normal.  

Several people here have commented that they can't get their results until AFTER their appt. with the consultant.  You can certainly ask - the worst they can do is say no.

The administration of contrast only if they decide you need it is pretty significant.  The radiologists can get a pretty good sense of what is going on in your brain while the scan is being done.  There must have been some suspect demyelination areas for them to go ahead with the gadolinium.

What makes you think of Chiari malformation?  As best as I know, and I am no medical expert on anything, CM does not need a contrast agent to dx.  CM is a structural problem in the brain.  

Go ahead and call the secretary and ask for your results-  it may take a few weeks for them to arrive at your consultan'ts office.  I understand that process is painfully slow.

No one should have to wait that long to hear their test results.

Welcome again -
Lulu

[Moufa]

Sorry, meant to write that I have been reading your forum for the last few weeks not months. The amount of information has been overwhelming, thank you so much to all in this community.