Questions for all with official dx???

[HellsBells1]

Just returned from my neuro for test results. This is 3rd time I've specifically been investigated for MS for different sx at different times.

Anyway, doc said "I don't have enough to dx MS" and "I don't think you have MS" so we're going to check a bunch of other things, more antibodies, etc. etc. Hubby, on the ride home, said he was so glad to hear I didn't have MS, and then he seemed a little PO'd with me when I said that this was not what the doc said, and tried to explain how long it takes sometimes for an MS dx.

My questions to those with an official dx (possible MS, probable MS, or definite MS):

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?
2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?
3) How many separate "flares" did you experience before getting a dx?
4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?
5) Were you ever told that it was all in your head?
6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

I am trying to help my husband understand that I am not "set" on having MS, and that the neurologist did not say I did not have MS.

Thanks for your help.
Helen

[Tomjadg]

I am one of the "lucky" ones. When I began having problems, I pretty much knew what it was after searching on line.
I made an appointment with my Neuro about two weeks later. He had me do MRI's right away down the hall, and confirmed MS right away, and started me on meds.

I'm heading for 3 years after Dx, and I don't get flares, just a steady decline in my problems. 3.5 years ago, I was walking around Gettysburg with a slight limp. Now, I am lucky to walk into work.

Everyone is different, along with their relationships with Docs. Your husband is just wearing those rose colored glasses...hahaha. Hopefully, you will get an answer one way or another.

[JerryD]

Helen,
I have been reading this board for 3 or 4 years and your question has been covered many times. The people , here, call it 'Limbo-land'.
I was dx'd after about 2 years of consulting several doctors. I saw about 4 neurologists for a firm dx. I had about 4 MRI's, one was with gadolinium ( contrast). If you are not dx'd with a firm dx, I would suggest you find out a few things.
Did you do a 'contrast' MRI ( with gadolinium) ?
Do you know your levels of vitamin D, B-12 and magnesium? Did you have a Lyme test? These are known to mimic MS . I am not a doctor but you need to be your best advocate, especially where your doctor's have no clear answers for you. Good luck

[Cira]

I was one of the few who spent little time in limbo, so I don't know how much help I'll be, but...

1. It took me less than 2 months.
2. Never, really, although if I hadn't had L'hermitte's, he probably wouldn't have looked for MS so soon....At first glance, he suspected I was diabetic.
3. 2
4. Nope. I don't think he would've dx'd me just based off my brain MRI if I hadn't also had lesions on my spinal cord, since my brain lesions are somewhat small, but he never brushed them off.
5. Never. And if I had been, I would've found a new dr ASAP.
6. No idea. I've had little things over the years that could've been something or could've been nothing. My gut tells me that I've had it at least since I was pregnant with my 2yo son. I brushed a lot of bouts of numbness in my legs off as sciatica....Who knows?

I also just want to say that I really relate to what you're going through with your hubby. As I mentioned before, at first glance, my neuro thought I was probably diabetic & only started looking for MS primarily because of L'hermitte's as well as some other abnormalities with the neurological exam.

My hubby also took this as high probability that I didn't have MS & was thrilled. I, however, knew that I was not diabetic & I knew that dx didn't explain everything I was experiencing.

He got really upset with me when I said that, saying he didn't know why I was so set on having MS & that he thought I would be happy that the neuro thought it was probably something else. I think he just wanted to believe that it wasn't MS & couldn't understand that as much as I wished I could believe it, I knew that it wasn't as simple as he wanted to believe it was.

His reaction really stemmed from his own fears & eventually he understood that I didn't want MS- I just wanted answers. Hopefully your hubby understands that as well. I know my feelings were pretty hurt when mine told me that it seemed like I wanted them to say I have MS.

Above all else, I really hope you get some answers soon! You've clearly been dealing with this for quite some time & it seems you've been more than patient.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[SNOOPY]

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?

Three (3) months: PCP, referral to neuro, appointment with neuro, testing, definite diagnosis.

2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?

None (0)

3) How many separate "flares" did you experience before getting a dx?

One (1)

4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?

At the time of diagnosis my MRIs were clear (0 lesions)

5) Were you ever told that it was all in your head?

No

6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

I was diagnosed at the age of 24, symptoms since childhood

[Milhous]

Personally I would look to get a different neuro. I was lucky in I got refereed to a clinic that is a center for MS research and stuff. but I have had a diagnosis for 25 years and they did not do MRI"s back then and it took 3 flares before they Went from probable MS to saying it was MS.

So go for a second opinion and see what they say.

1. 26 days
2. Never. My neurologist methodically rolled out the mimickers, but always told me it could be MS.
3. One that required a hospital stay, but she was very inquisitive about previous symptoms.
4. No, I had two enhanced lesions that caused Seizures. There was an obvious correlation.
5. Physical location yes. Psychosomatic no.
6. The more I think back the more sx I can correlate to MS. +/- 10 years.

[lemstar]

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?
29 years
2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?
two
3) How many separate "flares" did you experience before getting a dx?
two
4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?
no, my MRI showed conclusively that I have MS
5) Were you ever told that it was all in your head?
yes
6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?
29 years.

[22cyclist]

Just returned from my neuro for test results. This is 3rd time I've specifically been investigated for MS for different sx at different times.

Anyway, doc said "I don't have enough to dx MS" and "I don't think you have MS" so we're going to check a bunch of other things, more antibodies, etc. etc. Hubby, on the ride home, said he was so glad to hear I didn't have MS, and then he seemed a little PO'd with me when I said that this was not what the doc said, and tried to explain how long it takes sometimes for an MS dx.

My questions to those with an official dx (possible MS, probable MS, or definite MS):

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?
2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?
3) How many separate "flares" did you experience before getting a dx?
4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?
5) Were you ever told that it was all in your head?
6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

I am trying to help my husband understand that I am not "set" on having MS, and that the neurologist did not say I did not have MS.

Thanks for your help.
Helen

1. 1 day.
2. None.
3. 2 or 3
4. I had one that suggested early demyelination that was ignored.
5. No.
6. About 5 years. This was my fault. The first neurologist I saw for my Trigeminal Neuralgia told me I should be tested for MS because I was so young to have it. I blew him off. I was like, "No, I definitely don't have MS". So I didn't get an MRI as recommended. I should have. I saw an MS neuro for my symptoms later and a diagnosis. The one that ignored my demyelination MRI was a headache specialist who didn't know anything about MS. He did say I might have a "touch of MS"

How does anybody have a touch of MS? You either have it, or you don't. Well a year later I for sure had it, bad.

So my journey was kind of weird, but when I started to have real symptoms, my MRI showed the lesions that went along with them. I was a straight forward case.

Lisa
Moderation Team

[SunshineDaydreams]

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?

~12 years

2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?

~3

3) How many separate "flares" did you experience before getting a dx?

~hard to say, not seeing a doc, but by definition - about 32

4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?

~no

5) Were you ever told that it was all in your head?

~even after dx 2 times, and clinical evidence to prove the dx, have been told the lesions are 'too small for symptoms and therefore, may be psychogenic'

6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

~15 years

[Cat Mom]

Hi There, hope this info helps you.

1. 3 months, 1 day
2. 1 time I was told MS
3. 1
4. No
5. No
6. 6 months

[MarkLavelle]

1. 15 months from 1st neuro visit to 2nd opinion confirming dx
2. 1 2nd opinion (after lots of tests) of "no idea; call me when you have more sx" and 1 "could be, but not enough data yet"
3. No flares since initial onset
4. On first try at 2nd opinion, he said the MRIs weren't conclusive (insufficient evidence of 'separation in time & space')
5. No
6. 19 months from 1st sx to 2nd opinion dx

[wally8]

My questions to those with an official dx (possible MS, probable MS, or definite MS):

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?
2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?
3) How many separate "flares" did you experience before getting a dx?
4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?
5) Were you ever told that it was all in your head?
6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

I am trying to help my husband understand that I am not "set" on having MS, and that the neurologist did not say I did not have MS.

Hi Helen,I feel for you big time, the dx stage of this disease is an absolute nightmare. Its bad enough knowing that there IS something wrong and not being able to get a dx, with out having family, friends and even the doctors look at you like your crazy or seeking some kind of attention.

1. It took 8 years from first sx and suspicion of MS to get my dx.
2.Even though my mri had multiple lesions, my first neuro said they were not in the right spot for MS and that I did not have it.
3.I had 3 seperate flairs before dx.
4.Same as in question 2, my mri showed lesions radiolagist report was inconclusive with an MS? at the end.Neuro said he see's this all the time with age, even though the report said too many lesions for someone of my age!
5. YES! I was actually called crazy by my GP (in an off hand joking manner) who then tried to put me on anti depressants
6. 8 years

My sx are mainly sensory, and are invisible to anyone else, unless I am having a really bad day or have over done things. I beleive this is what made my dx so difficult, I passed all the in office neuro examinations no weakness, reflexes all fine.When I went back to a new MS neuro after my relapse of weird and new sx (right side of face went numb) after examination and check through my sx history and notes from doc, he too said I should'nt worry, that he was 99% sure I did'nt have MS, but will send me for an MRI anyway just to be sure(it had been 6 years since my last MRI). MRI came back with more lesions and some old ones were bigger and I got my DX.

DX was one of the worst times in my life, I felt so alone I could not speak to my husband about it because he too felt like I was looking for it to be MS, it is a common thread in the dx process.There is a big difference between wanting it to be MS and just wanting answers. So many times I have read on here that people were actually relieved to be finally told that they have MS because they themselves pretty much new for years before the doctors were willing to commit to a DX.
I truely hope your husband can get something from this thread, I hope for your sake he can be your rock. The most important thing he can do for you now is educate himself, so that you dont feel like your so alone in this. Its bad enough having to fight the doctors who fob you off and tell you its all in your head, but so much more hurtful coming from someone who is suppose to KNOW you.

Good Luck and I hope you get some answers soon


Kathy

[Karenkay]

[QUOTE=HellsBells1;1401720]

1) How long (in months/years) did it take for you to get your dx once official tests/investigations started?

About two weeks

2) How many times, if any, did a doc or neurologist tell you that you probably did not have, or did not have MS?

Never

3) How many separate "flares" did you experience before getting a dx?

One

4) Did you ever have an MRI that showed lesions with a radiologist's report suggesting MS or demyelination, and the doc said it doesn't mean anything, or he sees that in many MRIs every day, or some other brush off?

Never

5) Were you ever told that it was all in your head?

No

6) Finally, after you received your dx, how long would you estimate that you actually had sx of MS before you got dx?

In retrospect, I'm sure I had symptoms as a teen-ager.

[fishead]

HellsBells,

I have a definitive diagnosis of MS. I was one of the "lucky ones", as I was diagnosed about 3 days after my MRI. It showed "typical demylenination, as seen with Multiple Sclerosis". I had the MRI, because I had a sudden onset of problems with balance and coordination.

From the diagnosis until now, I have had flares. Some were just "annoyances", a couple put me in the hospital

When I look back (years before my diagnosis), I remember some SPECIFIC things that happened in the past, that were certainly "MS flares". I have seen many of your posts, and feel bad for you, as you seem like you are in "limbo land". I DO hope your docs will QUICKLY (soon soon soon) get your delimma figured out. Hugs to you, while you are going through all of this. We are "here for you"!!