I hope the third one is the charm! Ess gave you excellent advice regarding the timeline so the relapses and remissions ,if that's clearly what they are, will be easy to identify for the doc.
Sending good thoughts your way,
Ren
holy cow girl! bwhat a roller coaster. I can't believ e i am not the only one. all your symptoms i have. the only difference is i have the handi cap walk weakness in both legs, and now it is also weakened in my arms. i have seen 4 neurologists and sick and tired of the run around. it has been 13 mths for me, and frankly it *****. the neurologist said in order to call it neurological it needs to stay permanent. MY 2 MRi'S HAVE B EEN BOTH THE SAME. RESULTS ARE 2 SMALL LESIONS ON THE RIGHT SIDE OF MY BRAIN. BUT THE NEUROLOGISTS CALL THEM SMALL ABNORALITIES AND WE ALL HAVE THEM. (YAH RIGHT). i now have been going to physio and even the physio therapists thinks its intermitten M.S. . he even seen me all slurred speech, off balance muscle weakness and the walking handicap. but because the neurologist won't diagnose me here we are waiting and waiting. I also get severe eye pain behind the eyes and left ear problems too. it is crazy stuff but.... we got to keep on being strong. keep on fighting for ourselves because it seems no one else will. one thing i am thankful for is it can't take away my personality and my mental strength and as i say..... god only gives us what we can handle and i guess he must thinkl we are strong. take care and i really hope they figure things out for you. Lori
Yes, I have had other testing. Lyme Disease ruled out. Vitamin B-12 ruled out (I'm Leiden V homozygous, having just gone through a 6 mo. treatment for DVT; B-12 test done because mother has deficiency). The main test not done is the evoked potentials.
Thourough neuro exam (2002) was remarkable for clonus/hyperflexivity, otherwise normal. Given the neuro, I have less than complete confidence in his findings, since he had pidgeon holed me into a diagnosis based on myfirst lisiting of symptoms.
In case anyone wonders "Why so long to follow this through?', it's both simple and complicated. First round was more than a year. Get tired of appointments, expense, worries about absense from job and just decide it's something that can be dealt with, especially when episodic. Symptoms come back worse than before, but out of work and no insurance. Start up again when headaches, driving and other issues interfere with new job. Then son has persistent case of Lyme Disease, which ends up with me resigning position and him being hospitalized 5 days later. Struggle with symptoms and finding work. In new job for 15 months now and have missed too many days of work now to ignore things. Must push on.
Only wish company offered disability coverage. I would have opted for it when I was hired!
Have you had other testing too? evoked potentials? lab work to rule out mimics?
A thorough neuro exam? What were your results?
Just looking at your MRI pics....you have clear lesions. Larger and more in number than mine. However, I did have a very abnormal neuro exam, hyperactive deep tendon reflexes, positive babinski, positive hoffman's sign, clonus, ataxia, absent abdomal reflex. I had an abnormal SSEP, low Vit D and B12, and optic neuritis (dx by an opthamologist)
Making a dx of MS requires a look at all of these tests and more. I know some people far worse than I, with only one lesion on a brain MRI. MS is mainly a clinical diagnosis.
Best of Luck to you and God Bless!
Your story is so familiar to many of us who have had a tough journey. But you sound confident now and I bet you are right on the mark that you will get some answers.
So, you are seeing a demylination expert. I see a neuro at a research institute right now who is also a d-expert and am very impressed how he can sort out the different types of "spots" on the MRI and can use his educated clinical experience to see them for what they are. He was the first one to see over a series of monthly MRIs that some were remylinating and getting smaller, so small that they appeared to be disappearing. If they see spots changing size, then they know they are not not from age or high blood pressure (small vessel ischemia) and that they are likely to be plaques (MS or infection).
It's good you are seeing this new doctor. Please let us know how it turns out. I'll be particularly interested and hopeful that all goes well.
Take care.
Julie
P.S. I thnk your walking out on that doctor - with your father - was a very smart move. Very classy and proactive of you to not waste any more of your valuable time on him.
I do wish you luck, Audrey. It will be very cathartic to get to the bottom of things, and I hope that's what soon will happen for you.
I urge you to recast your symptoms into a timeline, especially if you feel you have had relapses and remissions. This will greatly help you and your neuro understand what is going on with you. Make sure you indicate when symptoms started, ideally giving month and year, what you did about them, if anything, and when they stopped. Don't try to guess what caused what or use too much medical jargon--that's off-puffing for neuros, who seem to hate it when patients have obviously been around the net. Our Health Pages have good info about doing timelines, if you get stuck.
Please keep letting us know how things are going.
ess