Almost 15 yrs. no diagnosis, MRI scans never the same?

Hi, my story started oddly enough in my sleep about 15 yrs ago. I woke up paralyzed on one side (age34), got over it, happened again , over the years I’ve endured multiple MRI’s, emgs,eeg’s, bloodwork,… My problem is I’ve had Drs. order multiple test, and most times no two MRI’s are the same. I’ve had one show optic scarring never showed up again, one mentioned Virchow Robin Spaces,2 mentioned Atrophy, and the most recent two showed T2 signal change in the left and right hippocampal.then had it redone and none was seen. My neurologist called me into his office a month ago and informed me, he thought I had suspected MS. But, seemed to withdraw from that after the last MRI. I used to go through periods of getting better then it would always come back. Now, it seems to be progressing, it’s a daily thing. I’m loosing the ability to do things with my arms, I’m suffering severe hearing loss in one ear with constant ringing (started this summer woke up deaf 2 times- 5 des. Later-- no answer). I had a lumbar puncture performed and it did show 1 antigen but not the three needed for clear diagnosis. We are going to Rochester Michigan next month. I’m scared. I hate new Drs. I’ve been insulted and degraded in the past. When this all started I was told I was phychotic. The dr. Actually put this in my records, and no one would take me serious, the only way I knew to clear it off my record was to even subject myself to physchological scrutiny. Luckily, I’m not nuts :-). Is it normal to have so many test come out like this?

My first MRI was in 1991 after l’hermittes. I have had 5 since and have a cervical lesion now since 2011. Which went in June 2013 and was seen again in Oct 2013. I have no answers yet and walk with a limp cos leg is spastic.

I am determined to push for answers in 2014.

Take Care Moyna xxx

Hi Weenus

What you have to remember is that a test (any test, every test) is only as good as the person administering that test, and this can make just as much difference as the person being tested, on the day. So:

A set of physical tests (sensory and reflex tests) should show if there are any problems inside your spine. Yes, and it gets taken further in one direction; No and it goes another way. Well, it should do. Problem is that for some people, the symptoms you report can influence the tests that they do, and the tests that they specify.

Best thing that you can do before flying all the way up to Mi, is to make a list. Handwrite it.
Put everything down.
Now rewrite it so that similar things are grouped together (left side paralysis and left leg paralysis are the same area, for example).
Now re-do the list so that what bothers you the most is at the top - then in descending order.

Now write again so that you have just the top five items.

That is what you tell the new Dr about - and writing it all out will help you remember.
Dont go into detail, just give the facts - real cool, real calm, just worried.
Do not hand over a list - you want the attention on you, not a sheet of paper (but have one handy in case you are asked for one).
And above all - stay calm. Remember that the only people who can say that you may be psychotic are clinical psychologits or psychiatrists - no general practitioner is qualified to.

Geoff

Hi Weenus, It always amazes me how lesions can appear and disappear and reappear later. Al I can deduce from that, is as dr Geoff says, any MRI is only as good as the person working the machine etc. it’s all about slices the scan takes. 3mm is usually the norm. Now although it sounds tiny, it is in the grand scheme if things quite thick when you think how tiny lesions can be. Then there’s the whole healing process, lesions can heal to a certain point in the early days of ms, making it difficult to pick them up, even with ep and LP. So all these things are worth bearing in mind. Take heart and keep at it J x

Dr. Geoff, you are right, I certainly do not want or be perceived as a physc case. Ha. It’s been a long “rd.” I’ve tried to ignore this during periods of remission, but it rears it’s nasty head again, and now it’s not going away. My arms and my hands are my chief complaint along with ringing in my ear, weakness, and dizziness. So, Mayos sent me a form to check off my complaints. Should I hold off on some of my symptoms.? Should I not admit to taking anti depressants – ha. I don’t tend to be high strung. I just don’t like all the attention, I tend to down play things. I hide a lot of symptoms from my husband and don’t complain. I just need answers, and closure-- so I can make the best of it, and move forward, persue the best treatment plan, diet etc.