How Long Did It Take for Dx?
 

I'm not sure if I have MS or not but I have so many symptoms of it and a huge gut instinct that is what my neuro issues are but all MRI's have came back clear until recent tests showed 'something wrong'- soon will have a very extensive neurological exam to rule out what is the actual dx. I do have an inner ear problem with migrane associated vertigo with severe hearing loss. TONS of MS symptoms since 2005...

I have read that a lot of you here have waited years and years for dx.. I've been told so many horrid things by doctors to my face it is just humiliating. Even my family has told me that by this point. It is just depressing.

Hey CoffeeGirl. Face went numb, went to Dr's that day and made him see me. Ordered MRI that I took home, saw the spots, saw/met a neuro within 2 weeks? Ordered spinal tap within a week. Spinal tap showed myelin basic protein in the high 20's. Should be almost 0 I think. 3 weeks? However im a paraplegic so I didnt know till it reached my face :( Thought increased spasms were from c6-7 injury so I increased baclofen year prior.
3 weeks or a 52 + 3 for dx.

I had unexplained neurological symptoms starting in 1964, that would come and go, but I didn't seek a DX until 1974, my PCP thought MS right away but was DX with Periferal Neuopathy at that time.:rolleyes:

The following year Doc sent me to a Neuro for tests. The Neuro put me in the hospital and did many tests. The myliogram/LP came back positive for a demylinating disease and Neuro, putting all the tests together, DXed me with MS, in 1976.:eek:

4 years. but since the doc was so unprofessional I went at least 3 of those 4 in silence about my symptoms. I feel for you.....

Everyone will have a different diagnosis experience, some are diagnosed quicker than others.

In my case, diagnosis took about 3 or 4 months. I was in the middle of a severe exacerbabtion during the diagnostic process.

I was diagnosed based on a positive Lumbar Puncture, neuro exam and symptoms.

I was also dx rather quickly -- three weeks. I also had a severe exacerbation. first MRI showed 4 lesions; 2nd of spine showed one. I also had a positive spinal tap. I did not realize it was a quick dx at the time. I was 50 when I was dx, but probably had MS for several years. Symptoms during that time were mild.

Thank you everyone for sharing your information. It is very helpful. I have been going at this for five years and feel like I'm going nuts. Not sure what they will come up with at this point. I have requested an MRI of my spine and no one will listen to me; of course because I'm a patient. :rolleyes:

Sally- I'm so sorry you went thru that for such a long time. Owie!! How on earth did you deal with all of it for that long? I hope they come up with something for me. I'm beginning to just lose it. Literally!?!?:p ((hugs))

Thank you again for your support. I know that everyone at this forum is going thru an awful lot in their lives. This illness is not one that can be taken easily. It is very difficult; emotionally, psychologically and physically- on the person with the illness and their familes/friends. Even though I do not have it/or who knows if I do/not, I am very aware of that. My heart goes out to everyone here. Thinking of you all.

Coffeegirl

I have had unexplained sx most of my adult life. bizzare this, and strange that, and loads of feeling great in between, followed by long periods of exhaustion and strange things. in 2001 I had major flare, but the tests showed nothing wrong. big flare in 2006 and the MRI showed many lesions, and the big MS center said I have had MS for quite a while, but many MDs missed the signs. it took me six years. I was given the migraine/stress lable for many years.

Took me many yrs.( at least 20) and quite a few doctors. It wasn't until my legs went numb and I could not walk that my doc at the time said " something is definately wrong" DUH, ya think!..hope you find answers soon.

Twelve years!

That's way to long as I unofficially diagnosed myself on the internet in less than an hour! Geesh!!

Over thirty years after my first teenaged symptoms until dx. Dx came when I had eye problems (double vision, scotoma, visual fields, etc.) plus MRI showing demyelinzation.
However, then later I was dx'd with Porphyria, which can produce some similar symptoms. At this time, I am in permanent limboland, not even trying to change it. Don't go to a neuro any more. I have neurological damage and some new symptoms due to newest disease, Polycythemia Vera, which can cause vision problems too due to "thick blood."
I figure I have a form of MS which may be related to Porphyria....I know from extensive reading here that MS takes MANY courses, many forms. Even a positive dx will not
necessarily be the end of the diagnostic journey, nor the experiments in how to treat,
etc.

My best treatment has been the Swank lowfat diet. Hard to stick to now as I am in a
"facility" recovering from a broken knee caused by falling down due to numb feet. It's getting harder with old age. A long trip from 17 to 79.

Me too! I was seeing the neuro for the first time (neuro #2 of 2... thankfully I only had 1 bum doc!) after my ENT doc sent the city hospital my MRI findings from his research, and I insisted on an MRI and he agreed and sent me for one.

I remember the kind hospital nurses took in this pale, skinny, nervous wreck of a girl who hadn't slept in days and put her on the Solu Medrol drip. I didn't know what the heck was going on!.. all I knew is I could taste pennies, and I had to do this for 6 days 3.5 hours each time (eeeesh!).

During this, 11 vials of blood drawn, spinal tap (lumbar puncture), question and answer session and assessment of cognitive/motor skills.

For me, the blood drawn and the spinal headache following the LP (bad, bad Laura for cleaning house 4 hours after getting home!!) were the worst parts, other than the limbo of waiting on the results!

Ok tangent, sorry! Just sharing my experience and went off a bit there lol! :)

From my initial 'searching' to find answers? 2 years. I had to be 110% proactive, contacting doctors myself and doing a lot of my own research and begging for help. I had to listen to a lot of condescending "Aww, poor woman!" responses from doctors, or the 'stress' excuse.

I hope you can get your answers without too much hassle and leg work. :hug:

^^~~ Yes!!!

It took about five months for me.

wow.... It sounds like a lot of you have had it come quicker than others with getting dx'd... What is the Swank Diet? How do you find the right doctor? How do you figure out how to find the right doctor?

In my case: I went to my PCP and he said he could not help me and I would need to see a Neurologist. My PCP gave me a referral to a neuro and I have been with the same neuro for 25 years.

Coffeegirl, as I said I was in the middle of a severe exacerbation and it was extremely obvious something was wrong.

It's not only about the neuro but what your testing and exam shows.

3 years for a dx, well at least a correct one, and the last year and a half me telling them what I had and trying to get a doctor to listen.:eek:

Hi coffeegirl,
It took three years for me to get a DX and I had symptoms the PCP and Neuro could see. It was not the "Classic presentation" of MS and No MRI's back then.

They tried many meds, then I was in the hospital for a week. They said you have MS. Maybe had it since 16 years old they said, but I am not counting that time. Just the three years or testing, testing, testing.

I think when I had flares in areas show up in so many different places, that correlated to my brain ( with my symptoms) it fit the "time and space" criteria to get a dx. All of this I never knew at the time. I didn't even know what MS was.:(

I had my first very clear MS symptoms when I was thirteen (facial pain, numbness in legs, “charlyhorse” so severe that I couldn’t walk). I was told I was faking. Yadda, yadda, yadda, at age 59 I was diagnosed with MS. My first question to the doctor after being diagnosed was, “So I’m not faking?” It was a nightmare.

re: how long?
 

I am heading to Mayo next week and hoping that they might have answers. If so, it will have been almost 6 mths. I understand your waiting, worrying, and wondering. hang in there.

I bugged doctors, finally my ear nose throat guy, finding nothing else wrong, sent me for the MRI, and when those results came in, he sent me to a neuro with a clue ;)!

Swank Diet is a low-fat diet, which some believe is highly beneficial for those with MS. I've ate a low-fat (under 15 g daily of Saturated and Trans Fats), no red meat Swank-version diet that I just came up with myself, and I've been following that for over 2 years now.

There's a lot of literature out there about the actual Swank Diet, local library or Internets have Swank Diet info. :)

Hi guys

I am almost embarrassed to say that my diagnosis was made unofficially on my first consultation with a neuro. He told me 'I think you may have MS, but we need to do more tests to be sure'. That was confirmed with MRI about six weeks later. I was a textbook case. I was half blind and was falling all over the place with very bad proprieception and major coordination issues.

Having said that, I can think of a number of times in the preceding 5 years that I had MS symptoms such as blind spots, slurring my words, numbness and pins and needles. I just pretty much ignored them and they went away by themselves.

Lyn

16 days. I woke up and could not take more then 2 steps with out falling. Went to gp 3-4 days later (weekend), referred to a neuro, had a mri and that was it.

I had ms sx for many years before, but disregarded. They didn't bother me much so I paid no attention.