Hi all x
Doc just phoned me x
The results of the scan are: ‘several white matter lesions in the frontal lobe and an enlarged pituitary gland’
She said she isn’t really qualified to say much more now and that the neuro should order another brain scan with contrast, spinal MRI’s with & without contrast and an LP.
No further ahead really then!!??!!
xxJenxx
Hey hun…glad you got your results…albeit undefined re a dx…guess it depends on the shape and size of the lesions as to whether they are MS ones…?? Rizzo could prob enlighten you on that better then me! The pituritary gland enlarged? what did gp say on this? Any indications?
ok well see if you gp will write to neuro regarding further investigations mris/lp…
how was your weekend?
Em x
Hi Em x
My GP wouldn’t be pushed abut the lesions - basically she said she can’t speculate and all we can do now is to wait to see what shows up when I have had the spinal MRI’s re possible MS
She is concerned about the pituitary gland being so enlarged as my biological dad had addisons and died from a tumour on the PG. The heamotology consultant I saw for over a year has now got back to her saying she had referred me to an endocrinologist several months ago and was shocked I hadn’t been seen yet - she doesn’t know what has gone wrong but she’s chasing it up now x
She said i’m complicated!! No news there then!!
As for my weekend…GRAND SLAM = ECSTATIC!!!
I’m not qualified either, but it doesn’t sound very like MS at the moment as MS lesions do not tend to be mainly in the frontal lobe and there is no effect on the pituitary gland in MS. There’s certainly something going on though!
I think that an enlarged pituitary is common in Addison’s. Addison’s plus lesions suggests AMN to me, but I could be completely wide of the mark. (It’s something I’ve read about, but not extensively.)
Best to wait to speak to an expert though!
Karen x
Hey hun…glad your weekend was good…omg thats terrible re endorinology referal…geez whats the matter with theses peple…esp with your family hx…!!
Youre unique hun…definately…lol…keep smiling eh…and really cant do much more now than wait…as Rizzo says…
(((hugs)))
Thanks Karen x I don’t know what to think to be honest! My head is in the proverbial ‘shed’!!!
I said does it rule out MS & it was then she said I was complicated - she said she still thinks it could be MS with all the other signs & the neuro spinal & opthalmologist pushing - but that she thinks it could also be something else alongside it
What is AMN?? xxxJenxxx
Ewww!! I’m getting more & more angry & frustrated!!!
When I found out when I was 40 that my lovely dad that brought me up was actually not my biological father and then my ‘real’ dad told me he had Addison’s Disease - at the time I felt it could explain a lot of my prior symptoms!! I then mentioned it to an anaesthetist prior to a minor investigative op I was about to have under general anaesthetic - he promptly sent me home to my GP to be tested. My GP was sceptical but did a blood test and it came back normal - so I never queried it again!
I have had very low blood pressure readings several times but they don’t see it as a problem. Twice under general anaesthetic my blood pressure has dropped extremely low and they have had great difficulty bringing my SATs up and bringing me round. I have thought nothing of it as I had had another general anaesthetic recently without any problems reported.
I’m now back to thinking I could have something like Addisons although I’m not thin, I have a horrendously good, hard to curb apetite and no pigmentation apart from around and on scars.
I’m also now very worried about my 28 year old son who to me has classic Addison’s symptoms and has also been ill for a long time. He is typical - extremely thin, nauseous, no apetite, very very dark pigmentation all over (particularly around his gums), chronic diarrhoea and fatigue.He also had a blood test done with the same sceptical, local GP which was also normal and was also dismissed and sent away with no further investigations.
I need to find out if this initial blood test done by the General Practitioner is enough to rule out Addison’s Disease!!!
Eww! xxxxxjennyxxxxx
AMN is adrenomyeloneuropathy. It’s an X-linked, genetic, demyelinating condition meaning that women usually don’t have symptoms, but men do (because they don’t have the protection of a potentially healthy second X chromosome). It is very similar to progressive MS as far as symptoms go. Most of the stuff you’ll find on-line focuses on men, but some women do get symptoms (although they are generally milder than men’s).
It was your dad’s Addisons plus your MRI results that made me think of it, but it is very rare so it’s very unlikely that you have it.
There’s a blood test (long chain fatty acids in serum) which isn’t perfect, but picks up most men and about 70% of women I think.
I’m sure the neuro is on the case though, especially with the pressure from other specialists!
If it’s MS or AMN or anything else like that, it’s not going anywhere in a rush, so you can afford to wait for the neuro to work out what’s going on. I hope it’s not too long - waiting sucks 
Karen x
Hi Rebecca - my son’s long term girlfriend has crohns disease (nasty thing before diagnoses but she’s good on the meds x) Apart from blood tests my son hasn’t had any tests specifically for it as far as I know.
I don’t know if it’s an age thing or not but he tends to get dismissed/feel patronised by the GP - because of this he won’t go back until he’s desperate!! I think he’s been once in 4 years!!
He looks like a drug abuser!! - painfully thin with terrible black shadows under the eyes - the doctor’s first comment is always ‘you don’t look well’ (???) I literally felt I had to assure the doctor that he doesn’t even drink let alone take drugs - he’s very much a ‘home bird’ - he still lives home with me - never goes out on the town or anything and is very settled with his long term girlfriend x
Whatever transpires with me I’m going to try & gently push him to go back and let the doctor know how ill he still is xx
Karen - it’s now on my list of things to eliminate!!! xxxxxxx or exterminate!! LOL xx