Questions for all with official dx???

[HellsBells1]

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

Thanks for your reply. Yes, I am aware of "Limbo Land" but wanted the perspective of people who are no longer in limbo land. The radiologists where I live are the ones that decide whether or not to use contrast. I have had 2 MRI's requested by a neurologist 3 years ago with specific request for Gladinoleum contrast, and both times the radiologist said it was not necessary.

My most recent MRI was on a T3, but not MS protocol, and no contrast (so 5mm slides). 9 lesions found in 3 areas of the brain, including parietal, frontal lobe, and periventricular - which I understand are common sites for MS lesions. But they are not large - 3-4mm each.

Have had many, many conditions eliminated. I have just asked for the Lyme test with this current round of testing, which includes Wilson's Disease and some other autoimmune stuff. Lupus eliminated twice. Neurologist says next step, if these tests come back negative, is to check for a "very rare" spontaneous genetic mutation of Huntington's. This is so much rarer than MS, and would explain one of my current sx of chorea / myoclonic jerks, but would most definitely NOT explain historical sx of double vision, IBS, bladder problems, sexual dysfunction, foot drop, years & years of sensory and neuropathic pain, episodes (months) of numbness in limbs or weakness of my right shoulder, and on and on. I just really don't understand why he says he doesn't have enough to make a dx of MS.

He said he sees lesions with people with diabetes, and over 50, etc. all the time. I am neither!!! Geesh, sometimes I do feel like I am the one going crazy.

Anyway, I want to thank all of you for your responses so far, and am still collecting more replies from anyone so inclined.

Cheers.

[tigergrl74]

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

Same Day

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?

None, I was diagnosed on my first flare

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?

No

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

Hmmmm, I am actually not sure on this one. Within 18 months of my diagnosis I was diagnosed with SPMS, so all theories would point to my having it for a while. But if I did I didn't notice it

[wally8]

Hi hellsBells1, I was just wandering if you have seen a neuro that specializes in MS, if not, that would be the next thing I would do. Also it sounds very weird and also high handed that the radiolagists disregard your neuros request for contrast, unless of course your neuro has not asked for a MS specific MRI. Not sure where you are, but here we get a script for the MRI and then it is up to us where we have it done. If you are able to do this, you could ask what their protacol was before you went to them.
Cheers
Kathy

[lstrl]

My symptoms started two years and one month before I got diagnosed. I never saw a dr for my first flare (sensory only), but when I went numb again about 7 months later, I pursued it. My first neuro had MRI results showing lesions that suggested MS and he was working toward a diagnosis but too slow for my liking (and he didn't sound very educated about MS) so I went to an MS specialist.

The MS specialist saw the c-spine MRI suggesting MS but because my new brain MRI showed nothing, she blew me off for months, acting like nothing was wrong with me. Both neuros refused to accept that my first flare ever existed, I guess because I didn't see anyone about it, even though it fit perfectly with MS.

Nobody told me it was in my head, but even after very clear results pointing to MS and nothing else (my labs were all clear), none of them got excited about finding out what was wrong with me. It wasn't until I had a third flare that left me almost immobile that I got the attention I deserved (not so ironically enough, this was my 3rd neuro because I refused to see the other two again). This time, after MRI of c-spine and brain, it was very clear to him I had MS, so I got a diagnosis maybe 2 weeks after I initially saw him.

I spent a year and a half and three neuros trying to get a diagnosis before it happened. Nobody told me I didn't have MS, but everyone was very hesitant about saying I did, even though MS is the only thing any of them spent any time looking for (although like I said, not hard because the first two didn't take me seriously for anything and they both acted like my tests were going to turn up negative, even though they had a bad c-spine MRI that really suggested MS).

I hope you get the answer you're looking for soon. You've been waiting way too long to figure out what's going on.

[ADavid]

I was dx in July 2012. Went to neuro due to numbness in both legs and feet, thought I had a bulging disc or pinched nerve. MRI showed lesions on spinal cord, then they did MRI of brain and showed multiple lesions there. Did EMG, they said I did poorly, and that, coupled with MRI's, they said I had MS.

All this in about a 7 day period. So sudden I was just overwhelmed, had no idea or suspicion I had MS. Didn't even know what it was, when he told me I was thinking Muscular Dystrophy and "Jerry's kids." Doc. had to carefully explain just what the heck MS was.

Now I'm on Tysabri, dealing with a few side effects from that, otherwise feeling quite normal, and wondering, do I really have MS? Can you have brain and spinal cord lesions and it NOT be MS?

I still have some leg and foot numbness and have started to limp a little, but other than that, feel very normal. Still working full time, no major fatigue issues. Brain still working.

Should I get a second opinion? Maybe it's not MS after all? I don't want to be known as the guy with MS.

My boss already feels sorry for me, they've limited my workload some, they often ask, how are you feeling, you need to take it easy, etc. One colleague said he had a relative that "died from MS," like it's a terminal illness I have. Which it's not. Some at work just seem to look at me differently now.

I worry now I won't be considered for promotions and they'll look to get rid of me at the first opportunity. I regret telling them I was diagnosed with MS. I feel and look normal, now I'm wondering if I even have it at all.

Called around trying to get appointments with other neuro's for a 2nd opinion, all are booked months out, and my insurance won't pay for another full work up. I want a 2nd opinion.

Anyone on here have advice, could there be something else that caused the dymlinification on my spinal cord and caused the brain lesions, other than MS? Maybe I don't want to know and just accept it's MS, the alternatives could be far worse.

I've asked my neuoro this several times, last time he said I've been in practice 25 years, I am 110% certain you have MS. But he's the only neuro I've seen. He offered to send me to a clinic in Dallas for a 2nd opinion, but I want out of his echo chamber and want to find my own source for a 2nd opinion.

They did rule out Lymes Disease though. They tested for that, it was negative. But I don't know if they looked at anything else. the dx came on so sudden, and next thing I knew I was on tysabri, within 3 weeks of being diagnosed I got my first infusion, now they say it's the only drug for me, anything else and I'll progress fast. With Ty I seem to be holding steady.

This whole thing just sucks. Some people go from dr. to dr. for years, almost seeming to pursue the dx of MS. Me, I thought I just had a bulging disc and needed pain killers, next thing I know I come out with an MS dx.

I want to be mad at someone, want to blame someone or something, scared of losing my job, now maybe I don't really have it at all? Call me confused, resentful, and hopeful, all at the same time. Just really struggling to accept this really happened to me. No one in my family, close and far, has MS, or had MS, but me.

[HellsBells1]

Hi hellsBells1, I was just wandering if you have seen a neuro that specializes in MS, if not, that would be the next thing I would do. Also it sounds very weird and also high handed that the radiolagists disregard your neuros request for contrast, unless of course your neuro has not asked for a MS specific MRI. Not sure where you are, but here we get a script for the MRI and then it is up to us where we have it done. If you are able to do this, you could ask what their protacol was before you went to them.
Cheers
Kathy

I don't know if the neuro specializes in MS, but he is head of neurology for the entire Vancouver Island Health Authority (in Canada). We don't really have a choice of who we get referred to. We can ask to get a referral for MRI at a specific hospital, but the health authority's protocol is the same - Radiologist decides whether to use contrast. I know my first MRI was requested with MS protocol and contrast, but no contrast used. Just across the Georgia Straight, in Vancouver, their MS protocol is to use contrast whether or not requested. However, when I paid for my private MRI most recently, the request was not MS protocol, but just "brain scan to check for lesions in the basal ganglia". Because it was private pay MRI, the doc would have had to request the contrast, but he told me in the beginning he didn't think I had MS, so he didn't request MS protocol or contrast. But still the 9 lesions found, and radiologist said demyelination could not be eliminated.

Our MS Clinics in Canada do not take patients until a neurologist makes an MS dx and refers you for follow-up at the clinic. They do not do dx at the MS clinics, which is where all of the MS specialists are.

[22cyclist]

Hells Bells: It is OK that you didn't have contrast. Lots of places in the US, at least in NC, the radiologist gets to decide if contrast is needed, especially if the neurologist only writes R/O MS instead of MS protocol. They are able to see on the FLAIR sequences if you have lesions that are consistent with MS in size and shape, and then will administer contrast to check for active lesions. That is all the contrast does is check for active lesions, nothing else. So you are OK without contrast.

If they asked specifically to look at your basil ganglia, it was to check where your myoclonic jerks were coming from as this is a common origin for myoclonic jerking.

Take care
Lisa
Moderation Team

[Alicious]

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

One week. I saw my GP on Thursday, neuro on Monday, and had spine and brain MRIs done that week. Thursday I was diagnosed, barring extensive bloodwork which all came back negative.

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

On my initial visit to the neuro he told me that was his suspicion, but that my motor/sensory symptoms could be spinal stenosis or a tumor pressing on my spinal cord.

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

In retrospect, three. Optic neuritis misdiagnosed in January 2007, sensory flare misdiagnosed as sciatica in April 2010, then the big flare that led to diagnosis in October 2010. I had no clue it was MS before the neuro brought it up.

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?

No.

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

2 years and 9 months.

[Thinkimjob]

Hello. My diagnosis was straight after my first MRI. I'd say before they had these scans, it probably would have taken a lot longer to be diagnosed with MS.

(And to be honest, I don't think I would have pursued the matter, because my first flares were a slightly tingly foot and a touch of ON, both of which went away completely, then nothing for years.)

I do think there is maybe too much reliance on MRI images, especially to establish whether a dmd is working or not.

My new scans look no different to the last ones six years ago, but I have definitely progressed.

Maybe lesions aren't the only thing to be looking for.

[HellsBells1]

Hells Bells: It is OK that you didn't have contrast. Lots of places in the US, at least in NC, the radiologist gets to decide if contrast is needed, especially if the neurologist only writes R/O MS instead of MS protocol. They are able to see on the FLAIR sequences if you have lesions that are consistent with MS in size and shape, and then will administer contrast to check for active lesions. That is all the contrast does is check for active lesions, nothing else. So you are OK without contrast.

If they asked specifically to look at your basil ganglia, it was to check where your myoclonic jerks were coming from as this is a common origin for myoclonic jerking.

Take care
Lisa
Moderation Team

Hi Lisa,

Yes, I realize that the lesions show up without contrast (as 9 of them did). All are oval in shape, but small. My question to you, if you know, is would a newly active lesion that has not caused scarring yet, show without contrast? I have heard both answers to this. I've heard that if the lesion is new (like within 3-4 weeks of onset of symptoms, it is really only the inflammation with contrast that shows the demyelination process beginning, and that until scarring starts to happen, it may not show without contrast.

The myoclonic jerking is a new sx and so if it is just caused by the start of demyelination in the basal ganglia, and no contrast was used, I wondered if it would be visible yet. My C-reactive protein was 3.9 showing active inflammation. My streptoccocus tests showed a recent infection which could in itself cause the jerking, but neurologist said if it was the infection, it is self-limiting and he would expect it to be gone now after 4 months. My thoughts were that the infection (which I was unaware of) may have started an auto-immune response of some type - perhaps demyelination.

Any thoughts would be appreciated.

[Noah091]

I want to be mad at someone, want to blame someone or something, scared of losing my job, now maybe I don't really have it at all? Call me confused, resentful, and hopeful, all at the same time. Just really struggling to accept this really happened to me. No one in my family, close and far, has MS, or had MS, but me.

Hi ADavid, I feel much the same way you do although I havn't received a firm dx yet. The doctors keep telling me that it is extremely probable. I think they are trying to get my ready for when I am given a formal dx.

Also, I do not want to freak you out, when initially, when I heard MS was not fatal, I was relieved, but after research I was quickly to find out that although MS itself may not be fatal, the destruction it causes and the symptoms it creates can. People do die from MS unfortunately, although it is rare. Like I said, this isn't to scare you or anyone here, but I think when we talk about this disease it is important to be realistic so there are not surprises.