Third go round- wish me luck!

I’m trying to prepare myself in every way for what I hope to be the last step in a successful journey towards a diagnosis for symptoms that have plagued me now since July 2002. This will be my third neurologist and one who specializes in demyelinating disease and MS. I am hoping that I have found a good doctor and can stick with this until I get a diagnosis, whatever it might be.

For giggles, I’ve posted three MRI brain slides on my profile from 3/2010. According to the radiologist report, there is no significant change from a previous one done 10/2007. The 2007 radiologist suggested a demyelinating process twice in his report, but my neurologist relayed it to me as some small white spots on the brain that could be a normal part of aging (at 51). I did not see that report until several weeks ago and I was very upset. If there is comparability between slides, I think that I can count a few more lesions in the most recent MRI.

My computer crashed a few months back, so I lost my symptom tracker and had to request copies of medical records going back years.

Today I received the records from the first neuro, who was a complete and total quack. He was so focused on a vestibular disorder (Meniere’s disease) and to read his reports today brought back all of the feelings of frustration I had while under his care. My last visit with him, I brought my father along for support and his opinion of the doctor. We asked what he had ruled out and when I asked about MS, he said that he had done a LP. No, I said. He went back through his records and realized that he had never done this and offered to do it then and there on the spot. I asked him to leave the room for private conversation with my father, who was appalled. Needless to say, the office visit  ended very quickly after that.

I sought medical help after an initial incident in July 2002 where I absolutely could not drive. Sx were light headedness, dizziness and brain fog. I thought it was low blood sugar, but 2 chocolate milks and 6 Funny Bones later, there was no improvement. I had to call someone to drive me home.

My symptoms have been:
• Light headedness, dizziness and brain fog, which now bring on nausea
• Vertigo
• Double/blurred vision
• Tinnitus
• Balance problems/falling- is the fall due to balance or muscle weakness?
• Numbness, tingling and clonus
• Headaches
• Fatigue
• Weigh loss
• Language problems, both verbal and written
• Bowel problems
• Irregular sleep patterns
• Memory problems
• Swallowing difficulty

My “episodes” can last for months, especially with headaches, numbness and tingling and the “unbearable lightness of being”, with symptoms occurring on virtually a daily basis. I’m home from work today because of the “unbearable lightness of being” and visual problems. I absolutely could not make the 45 min. drive to work.

For all of you out there just starting your journey, I’d recommend keeping a good record of your sx and get copies of all your medical records. And to all of you, thank you for this forum and please wish me luck and support as I try to persevere through this next and hopefully final round of doctors and testing.

[essdipity]

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

[HVAC]

Good luck,

Alex

[Sarahsmom46]

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.

[daisy.girl]

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!

[Audrey_M]

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!

[lori115]

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

[rendean]

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