HELP! Need Doc who can Diagnose with Negative MRI!!!

[chloi]

Hi. After years of suffering, I am fully convinced that I have MS. All the classic symptoms are present - multiple "attacks", pins and needles, diagnosed with intention tremor, incontinence, memory/cognitive/speech. I need to find one of the "world-renowned" physicians who some of you have spoken of who can diagnose for that 5% who present with negative MRIs. I can't suffer for another 5-7 years before getting a diagnose for treatment. If anyone has a physician like this, please write me. I will travel wherever I need to! Thank you so much!

[Shashi]

Hi and welcome!

It is extremely rare to find a doctor who will diagnose a patient with MS who has a negative MRI. Very rare. Doctors follow what is called the McDonald Criteria when diagnosing MS. You can do a Google search for it to find what is involved in that criteria.

Have you been tested for all of the conditions which can mimic MS? Fibromyalgia, chronic fatigue syndrome, Lyme disease, Vitamin B12 deficiency, Celiac disease, etc.? If not, you'll need to be tested for those first, since MS is a diagnosis of exclusion, meaning only after everything else is ruled out will a doctor even consider MS, unless there is clear evidence on an MRI to indicate it.

All of my doctors are convinced that I have MS. I've been trying to get a diagnosis for whatever this is since summer of 2005, though I've had symptoms since 2002. Even with five brain lesions, a mild attack of optic neuritis, and multiple exacerbation of symptoms, I haven't been diagnosed. And probably never will be because I've had it with the whole process and have given up.

When you do find that doctor who will diagnose you with a negative MRI though, let me know, and I'll be next in line for an appointment. Until then, you're welcome to hang out here with the rest of us who are in Limbo.

I hope you find some answer soon. Not knowing what is wrong with you can be so frustrating, can't it!

Hugs,

Lisa

[sirach36]

Hi Lisa, That was a nice response. You are always kind to others despite your frustrations. I am mainly a lurker but experience your frustration. Just wanted to wish you and everyone here a Happy Thanksgiving for all your kindness to others.
Sue

[chloi]

Hi Lisa -

Thanks so much for your response. I can't even tell you how much I appreciate it. I have done all the research, and have been tested for all of the other possible conditions, as well... Negative. I have one lesion in the pituitary area, but I am being told by Neurology that, since it is in the pituitary area, it is an Endocrinology issue. Then, when I go to Endocrinology, they say it is not an Endo issue. I think the thing that confuses me, Lisa, is that the MS Society website specifically states that 5% of us do not reveal lesions on MRIs - which is not to say they are not there - they are just "silent". If that's the case, who are the doctors that are diagnosing the 5%?

Thanks,
K

[Johooper]

I can only imagine how frustrating it is for those of you in limbo with no DX and you have my sympathy fully.

Jo

[seeuinct]

Question for Shashi

Shashi- I read your post on how you got your user name....very nice story.
If you have 5 lesions and ON why arent they diagnosing you? Do you not meet the McDonald criteria?
I thought you had to have multiple lesions and 2 clinically isolated symptoms to be diagnosed. Did you ever have the LP done?

[Shashi]

Shashi- I read your post on how you got your user name....very nice story.
If you have 5 lesions and ON why arent they diagnosing you? Do you not meet the McDonald criteria?
I thought you had to have multiple lesions and 2 clinically isolated symptoms to be diagnosed. Did you ever have the LP done?

Hi seeuinct,

I did have an LP back when my symptoms first started in 2006, but it was negative at the time. I haven't had one since.

The problem with the lesions is that one radiologist a year ago said that there were four of them and that they were non-specific. My neurologist (an MS specialist) said there were five (same MRI scan) and that we haven't ruled out them being caused by MS. On my latest MRI, which was done last month at a different hospital, the radiologist said that there were two lesions, in spite of the fact that I can still see all five that the MS specialist pointed out to me. He also said that they weren't indicative of demyelinating disease, though my MS specialist said they possibly were. So, everyone is just all over the place as to how many there are, where they are, and what is causing them.

Regarding the ON, the neuro-ophthalmologist said from my symptoms (blurred vision when I'm overheated or exercise, color desaturation, etc.) and from clinical signs, I'd had a mild case of ON sometime in the last two years in my right eye.

However, my VEP test was normal, though right on the border of being abnormal. (It has gone from 98 msec delay back in 2006 to 113 msec delay last month.) The MS specialist said it should be more abnormal, so disagrees with the neuro-ophthalmologist that I've had ON.

Anyway, you kind of get the picture here. I've seen five different neurologist, two of them MS specialists, since 2006; had multiple MRIs of my brain and spine (the brain lesions didn't show up until 2009); and had tests for everything else it could possibly be. No one can agree on anything or figure out what is going on, whether MS or anything else.

I've been on this roller coaster ride until I'm just fed up with it, so after this last MRI in October, I decided that it was my last MRI ever. I'm not doing this anymore. I even cancelled my follow-up appointment with my neurologist for next month because I just don't see the point of going anymore.

Thankfully, I only usually have two bad exacerbations a year, usually when the weather changes in spring and fall. The rest of the time, it's just annoying symptoms such as tingling, buzzing, muscle spasms, tremors, etc. Most of my symptoms are manageable with baclofen, Valium, and gabapentin, and when they're not, I just do the best I can until they let up.

It is incredibly frustrating, but I don't know what else to do. So, I'm just going to enjoy as much of my life as I can and try not to worry about what I can't change. I'm not going to let whatever this is steal my happiness or my peace.

Hugs,

Lisa

[aboutmygirls]

yes, limbo land is very frustrating. i am actually there with you....so please do not feel like you are alone.

i am very frustrated with my neuro...i have had several mri's done and they have not found any lesions. i have had several other tests done to rule out similar diseases. in one breath my neuro will say that he knows something is wrong...that my brain is sending signals and that he does not think that my body is getting them...or not getting them correctly, but then in the next breath he will say that it may be caused by my subconscience (even though my psychologist said that he things that is bull pucky!!!!).

my neuro is finally sending me to a specialist next month (after a year and a half)....but i am sitting here in limbo land on tons of medications to help my "symptoms"....but with absolutly NO ANSWERS!!!! i hope that you will find the answers you need soon. just remember that you are not alone and that you have tons and tons of support here good luck!

[twisterred]

I wonder if there isn't a concrete diagnosis in spite of there being evidence, just because you are a woman.

I was watching Dr. Oz recently and he had a special about why Dr.s aren't paying close attention to patients.

One reason was, and he even said it is unfortunate, is being a woman.

Seriously, he said that.

[Shashi]

I wonder if there isn't a concrete diagnosis in spite of there being evidence, just because you are a woman.

I was watching Dr. Oz recently and he had a special about why Dr.s aren't paying close attention to patients.

One reason was, and he even said it is unfortunate, is being a woman.

Seriously, he said that.

Unfortunately that is a possibility for all of us women in limbo.

My husband and I were once trying to find a new general practitioner. We went to one doctor, who was great with my husband. He listened to all of his complaints, made some great observations, and was very caring.

Then it was my turn. My neurologist had recommended that I keep a list of my symptoms, which I did. When I handed the list to this doctor, just so he'd know what I had going on, he immediately told me that I was obsessive for keeping such a list in the first place, and then proceeded to go down the list and dismiss most of the symptoms as being caused by anxiety. At the time I was taking Valium for dizziness and muscle spasms and Wellbuterin for mild depression, so I'm not sure how any anxiety was supposed to get through those two meds! He also said that if it was MS, it shouldn't be causing the pain I was having from muscle spasms and nerve pain. Some of the symptoms on my list he wasn't able to dismiss as anxiety, like the present Babinski reflex and hyperactive knee reflexes, the abnormal evoked potential on my left leg, etc.

When he finished, he told me he couldn't help me with any of those symptoms. I told him I didn't need him to, I just wanted him to be aware of what was going on. He proceeded to change my anti-depressant, despite the fact that my neurologist had prescribed it because it also gives you a bit of an energy boost. (He evidently had skipped the part of the list where I described the horrible fatigue I was having at that time before I found ALA/ALC.) I never got the prescription filled. And we never went back to him either.

Unfortunately, some doctors do still have the outdated notions that womens complaints are caused by anxiety or hysteria or whatever and also that MS doesn't cause pain. It's sad, but true. Maybe someday they'll listen to us. We can only hope!

[mommyRN]

I wonder if there isn't a concrete diagnosis in spite of there being evidence, just because you are a woman.

I was watching Dr. Oz recently and he had a special about why Dr.s aren't paying close attention to patients.

One reason was, and he even said it is unfortunate, is being a woman.

Seriously, he said that.

Sadly, I believe that. Because I am a woman, everything is due to stress, balancing work-home-family-school, or "in my head". It's frustrating.

[jumpinjiminy]

Do those docs exist? Lol. I keep wondering how they know that 5% actually have MS if there are no MRI lesions. I also want to know how they came up with this 5% number when there are obviously a lot of people walking around with S&S, like Shashi, and no dx at all. Maybe that number is far higher than 5%, but because they have no dx, they can't be counted. Right?

Pubmed has some interesting reading on studies comparing OCB negative MS patients with OCB positive MS patients. Apparently, OCB negatives have a tendency to show fewer MRI lesions. They also tend to have a more mild course, but not necessarily a lower EDSS score. Another interesting observation about this particular segment of the MS pool, their MRI images don't correlate with their exacerbations and remissions, so these can't be used as guides in monitoring their condition as they can with the cut and dry, MRI positive RRMS cases. A fair portion of them are male and tend toward PPMS, but not all.

Wish I could find references to similar studies on MRI negative MS patients. My search so far has been unfruitful. I've been looking for clinical studies that might include people in this situation, not for treatment, but for diagnostic purposes. It's coming along slowly.

[jumpinjiminy]

And not to be scaring you or anything, after asking this and similar questions in the past, it seems anyone who was diagnosed without a positive MRI (and there are very few) had some pretty serious flare ups that prompted the diagnosis. These flare ups are the kind that land you in the hospital on IVSM for a few days with noticeable, lingering deficits.

I've become of the mind that as long as I'm not in that boat, I don't really need to be injecting myself everyday with an overpriced drug that could be available for someone much worse off than myself. After all, the more people who use it, the higher the price goes, right?

My local neuro would likely treat any severe flare ups with IVSM, and that's good enough for now. All I needed to know was that somebody had a game plan just in case things went south really fast.

I'm good with the rest. Like Shashi, this is background noise most days. But for the days it becomes a concert, I've got backup.

[seeuinct]

Shashi and Jumpin

What about doctor's out of your area? What about finding dr's that specialize in rare types of MS? I watched the youtube clip with Montel WIlliams about medical marijuana and in that clip he talked about several dr's at like Harvard, Johns Hopkins, and another prestigious univ that are on the cutting edge of discovering new info about MS. I just wonder if one of them might be interested in looking into your case...Although traveling to them could be a cost deterrent, maybe sending them your info (med records, test results) could result in getting answers. I know you must be frustrated...just trying to help.

[SNOOPY]

it seems anyone who was diagnosed without a positive MRI (and there are very few) had some pretty serious flare ups that prompted the diagnosis. These flare ups are the kind that land you in the hospital on IVSM for a few days with noticeable, lingering deficits.

- I was diagnosed with a negative MRI.
- I was having a serious exacerbation.
- I did not "land" in the hospital except for testing.
- Steroids were not used until after my diagnosis and it was not IVSM.
- I had to work to get back to baseline, which I did.

I recieved a definte diagnosis based on a positive Lumbar Puncture(LP), neuro exam and symptoms. Any doubts about a MS diagnosis were removed one year later when I had an exacerbation like the first but worse.

chloi:

All the classic symptoms are present - multiple "attacks", pins and needles, diagnosed with intention tremor, incontinence, memory/cognitive/speech

Although the symptoms you list can be seen in MS they can also be seen in other conditions/diseases, even some medications can cause these symptoms.

Have you had testing done by a Neurologist? Has any of the testing been positive? Bloodwork? Have other conditions/diseases been ruled out?