How long did it take you to be diagnosed?what did the tests show? what were your sx? - Multiple Sclerosis Message Board

searchout · 12-04-2008, 03:48 PM

Hi All,
I am still trying to work out why my dr has not diagnosed me with MS despite me having very common sx associated with MS.

When i first got ill, I had lots of high levels of inflammation in my blood and high IGG/IGM antibodies. They all have gone back to normal now. Do you think it is possible to pass through the relapsing remitting stage of MS to the secondary stage which is not inflammatory led? If so would it definitely show up on an MRI scan and Lumber punch at that stage? Would I have lots of lesions on the brain and have motor nerve problems?

I have 2 white spots on my MRI only, (but I have never had it done with contrast) I am almost sure I have MS as the sx are so bad, I just don't understand why I am not getting the confirmation in the medical tests....do you reckon it is because all my sx are sensory??

I would like to hear about other people's experience of getting diagnosed, what showed up on your tests? what were your Sx at the time? and did has it taken anyone over 10 years to get a diagnosis?

MSJayhawk · 12-04-2008, 05:36 PM

Many doctors worry about a misdiagnosis- especially in the litigious society we now inhabit. I just read about a woman who has had MS for 40 years, but she did not get her diagnosis until she turned 70 years old. Although you might think "MS", a neurologist has to think "MS or ???". Symptoms of MS can also present with other diseases.

I was diagnosed in 1982. From the time I presented with my symptoms until diagnosis was 2 months. I was lucky that the chief neurologist was my doctor and he ran the gauntlet of tests in 3 days. I even had an early MRI. (LOL, the MRI then was like the invented wheel, but I am glad I was a test case!). I had my diagnosis on the third day.

Sooooo, you can see a wide difference in time to diagnosis. In fact, in hindsight, my symptoms started when I was 14. I had lived with it for 5 years without knowing. The Lord used a 2 X 8 to get my attention in 1982 because the 2 X 4 in 1977 failed to get my attention.

The good news is that MS diagnosis nowadays is lightyears beyond where it was. (insert 5 foot snow drifts uphill both ways.....

) Well, any way, stay proactive and run the tests. Your neurologist will get to a diagnosis. You want to be sure of your diagnosis before you start any meds. I have not used meds for 30 years (26 since my diagnosis).

Snoopy61 · 12-04-2008, 07:47 PM

There is NO blood test that will indicate MS. Blood work is used to check for other things. There are 100 other conditions that can have symptoms similar to MS and some of them also cause lesions.

My story:

I went to my PCP because I was having extreme difficulty walking, L'Hermittes, extreme fatigue, numb from the waist down, vibrations/buzzing, weakness in the extremities and extreme pain.

My PCP said he could not help me and handed me a referral to a neurologist. Once I started seeing the neurologist I was diagnosed in about 3 months.

Diagnosis was based on a positive Lumbar Puncture (LP), neuro exam and symptoms. I have has symptoms since childhood and diagnosed at the age of 25.

libybil · 12-04-2008, 08:00 PM

my first symptoms were a little bit of dizziness when i'd turn my head to look left or right when driving, then when i was working out, noticed that my right knee wouldn't bend smoothly, it jerked! went to my pcp, he referred me to every single kind of specialist, including heart, ear,nose,throat, had an ekg, eeg, etc, but the one that found anything was the last one, a neuro, he looked at my mri's & said i've probably had ut since i was a teenager! and i was 29 at the time, with no previous symptoms! it hit all at once like a ton of bricks, but by then i had an office job & was able to keep working for another 4 yrs

searchout · 12-05-2008, 03:56 AM

Thanks everyone for your replies, I really appreciate it.
Jay: no meds for 30 years, what made you decide not to take them? I suppose back then they were not so effective. Are you in a progressive phase after 30 years (If you don't mind me asking) whats is the average EDSS when people go into a secondary phase? (if you know)

Snoopy: in the last 4 days I have developed L'hermittes but there is a general vibration down the bottom of my spine when I am sitting normally so both you and Jay were diagnosed quickly...

Lib: so when you had your MRI scan were there lots of lesions? did you get diagnosed with RR?

Thanks again for your responses