Upset Over Possible Misdiagnosis of MS

[getoutside]

Hello. I am currently experiencing symptoms that I had seven years ago which led to a diagnosis of MS. However, a new symptom has shown up that is pointing away from MS, retinal vasculitis. It may have been there all along, but, only caught now due to a new opthamologist who referred me to a specialist. My vision was the first symptom seven years ago too, only the vision field test then didn't show much.

Understandably, I am not at all pleased with the neurologist who diagnosed me. Seven years ago, none of the tests he ordered pointed to MS. He didn't order an LP because he said if I either had MS or Sjogrens Syndrom, the LP wouldn't differentiate. ???? (I am now thinking that was his biggest error and wishing so bad that I had known or known to insist that he should have ordered it to possibly rule them out!!!)

So, a few months after our first visit, he ordered another MRI. The MRI showed what he thought was a new lesion and said, I can't be for certain, but, I think you have MS and, at this time, I would rather treat than not treat.

The next four years I was on Rebif feeling sick every other night. Then I started having really stiff muscles and I blamed the Rebif and got on Copaxone. Because of the muscle stiffness, he ordered another MRI. The first since he dianosed me four years before. Well, I came back to review the results and he said. "Your MRI came back clear. The lesion is gone. I wonder what that was? Would almost think you don't have MS." When I questioned him, he then said "Oh, I still think it is MS." ???? Needless to say, my confidence in him all but disappeared.

Stupid me though. At the time, I should have gone to another neurologist for a second opinion. But, I was feeling so good I kept putting it off. Well, two years later I finally switched to an MS Specialist. He supported my first neurologists diagnosis because of a lesion behind my left eye (the eye with retinal vasculitis), but also said that I either have a mild case of MS or the medication is working and that I could probably go off the meds in a few years. Good news for me

Then about a month ago, the vision in my left eye blurred and I was diagnosed with the retinal vasculitis. Now the Retinal Specialist and MS Specialist are thinking I don't have MS after all. That the lesion he saw was actually from vasculitis not MS.

I won't know the LP, MRI, or EEG results for over a week but am seeing a rheumatologist on Thursday. The biggest reason that I am upset is about having injected myself almost everyday for seven years with very strong medication. If the LP does not support MS, I will be extremely upset that my first neurologist didn't order it. That we could have kept looking for whatever this is.

Although, I don't know the results yet, my gut feeling is that it too will come back negative for MS. Other symptoms I have had over the last seven years make me wonder if they have been pointing to something else. Definitely something rheumatological (is that a word ).

Okay. It feels good to get that all out. Once I get the LP results back and, assuming I am correct, I really really want to write a letter or something to let my first neurologist know. Is that wrong? To question why he didn't order such a standard test at the very beginning? I won't be mean but will definitely let him know that I am upset.

My purpose in writing would at the very least be to let him know that he should order an LP for other MS patients he may have if he hasn't already to avoid this in the future. That it could rule MS out. Seems like a no brainer now. !!!!

Any thoughts? If any of you haven't had an LP and there is any question about your diagnosis...get an LP!

(I will be rather humiliated if it comes back positive. But still...get an LP)

[MSer102]

However, a new symptom has shown up that is pointing away from MS, retinal vasculitis. ... Now the Retinal Specialist and MS Specialist are thinking I don't have MS after all. That the lesion he saw was actually from vasculitis not MS.

I guess I don't understand where the idea came from that retinal vasculitis points away from MS or why the retinal special thinks you don't have MS after all just based on retinal vasculitis.

There ARE reports in the medical literature that DO associate retinal vasculitis with MS. Maybe if you print out those reports and discuss them with your doctors you could get a better idea about what's going on?

And as for the LP, about 10%(?) of people with MS have normal LP's. You can still have MS even with a normal LP. A normal LP does NOT rule out MS. So if you are thinking that all you had to do or have to do is have an LP and you get a 100% guaranteed answer about whether you have MS you are, well, not correct. For a lot of people the evidence for MS meets the diagnostic criteria that they don't even have an LP to get diagnosed. My LP was normal. Your neurologist was not necessarily wrong to not order one.

I can appreciate how upsetting all the uncertainty is! But it sounds like you are working under a couple of assumptions that are wrong because there's way too much information missing and it's the wrong assumptions that are making you want to put blame where it might not belong.

Maybe if you read up about retinal vasculitis and MS and the role and limitations of the LP in diagnosing MS you can get a better idea of what's going on. And most of all it sounds like time for a really deep talk with your doctors. I hope all of the answers come together for you soon so you can keep moving forward.

[getoutside]

Hello MSer102, Thank you for your reply.

I guess I just feel that since he was not certain I had MS or not at diagnosis an LP sure wouldn't have hurt and may have given me more confidence in the diagnosis. I would feel that he had covered all the bases if he had.

Also, my MRI 6 months ago was the same as it was 7 years ago and the mysterious white mass my neuro used to tentatively diagnose me was still not there. So, yes, I guess I can't help but question my original diagnosis.

As far as the retinal vasculitis goes, I don't know what to say. I will definitely ask about it though. Thank you for bringing it to my attention. My prior searches didn't lead me to a MS and retinal vasculitis link and both doctors agreed whatever they saw isn't associated with MS. So..???

I seem to have had symptoms of many autoimmune diseases. MS, Reynauds, Sjogrens, Behcets, RA, lupus and others....it is very frustrating. I have the highest RF that both doctors have ever seen and am not sure what that means. So yeah, not too sure about this MS thing anymore.

Wish me luck

[Fed Up]

Since you have confusion about your diagnosis with your current situation. I doubt a spinal would have made much difference...

What I do hear you saying; Why did they not go thru the 'process' of EXCLUSION to make sure, you did not have other disease, as well. For the time.

Sadly, there are so many threads here of MS'rs without a positive tap and do have multiple disease. You feel, 'something' was missed. No matter how angry you feel, it won't change the past and you seem to be doing what you need to. Sure sorry, but even doctors are human too!

I understand your feelings and do certainly wish you well in your spinal. Like MS102 said; It IS definitely TIME for a talk with your docs! fed

[mercadies25]

I had a normal LP and am dxs with MS. I don't want to believe it. I have research and gone over my records as much as a layman can understand and looking up what words mean.

I had 7 lesions in the brain with my first mri, same a year later, a year on rebif another mri and the lesions had shrunk considerably. Isn't that what we take the rebif for.


My doc said well the meds are doing what they are suppose to be doing. although I don't feeel much better the lesions are smaller.

This disease is a mystery to all of us including neuros. I have gone thru 4 neuros before I found one I like. So if you're not confindent in yours look for anther.

Goood Luck!!!

[suziq38]

My MS doctor suspects MS, but he is not sure.
I wrote both of my mS doctors a letter as my MS doctor is one of the best on the West Coast. He is a fantastic doctor.
I asked them (in my letter) to prove to me that I had MS at this time. They could not as I only had one difficult time last year while on vacation in the heat. I could barely walk.
He said that may have been my exacerbation.

It was discovered that I had severe spinal stenosis. My symptoms were so acute and troubling that I took a leap of faith and had cervical spine surgery. A plate was put in my neck to stabilize it.

It seemed to work and I have been improving day by day.
I still have tingling in both hands and feet.
I am tired if I stand too long in the morning.

I tested negative for the brain MRI, T spine, and L spine MRI. The C spine had a huge light spot on it.

My L spine was very clear. My blood tests were all negative.

No vision problems at this time.

My MS doctor finally settled on "possible Transverse Myelitis,"
which means maybe, maybe not. He is guessing.

Just to let you know, these are very difficult conditions to diagnose. I had no idea until I went through the process.

I refused drugs for MS, even though I knew that the doctors were thinking I could use some.

I am waiting to see if I have another exacerbation.
I have not had it yet.

I am scared of taking those strong meds without a definitive diagnosis.

To complicate matter further, I recently took an MRI of my right knee and it shows a lot of mechanical problems (my past has been full with various sports and lifting). I needed arthoscopic knee surgery. I just had that done 8/28/13 approximately 8 months after my neck surgery.

I am hoping that the so-called exacerbation of a year ago, was my knee acting up.

I hope so.
Time will tell.


Good Luck, and don't dwell on it too much. At least they found out that it wasn't MS.

[Marco]

Getoutside,
I completely understand why you do not have confidence in your diagnosis. In a matter of months, I was diagnosed, undiagnosed, changed a number of times and then I was diagnosed yet again with MS. Many MSWorld visitors are frustrated with their neurologists because they won’t support a diagnosis for MS. Unfortunately, without a specific test there will always be medical errors made on both sides of the diagnosis.

The reality is I did have MS and I am glad one of the neurologists pushed me to begin therapy. The MS society wants you on therapy as early as possible to hopefully prevent your MS from advancing to the next stage. For example, people with only 1 attack may be categorized as Clinically Isolated Syndrome (CIS), by going on therapy early some patients never have a second attack and progress to Multiple Sclerosis.

Optical neuritis is often the initial symptom that sends people to a neurologist. The ophthalmologist/doctor that referred you to the neurologist obviously saw a need. In turn, the neurologist suspected something prior to ordering the MRI. Did he also find any other relevant information in your case history or during the neurological exam?

As others noted, the value of lumbar puncture (LP) for diagnostic purposes varies from patient to patient. The LP can be counterproductive if it is either a “false negative” or “false positive,” but otherwise serves as another data point. In your situation, I would not let the LP results alone determine whether or not MS is indicated.

Either way, a lesion was found and a radiologist read the MRI images and then sent the neurologist a report. The radiologist should have considered many factors before supporting the suspicion of “multiple sclerosis.” A number of situations (e.g small vessel disease, hypertensive, migraines, infection, trauma, etc.) can cause lesions and must be ruled out by the radiologist. Multiple Sclerosis is not normally a “differential diagnosis” simply based on the discovery of an incidental white matter lesion.

Some lesions heal over time (completely disappearing) and some do not and may become what is known as a “black hole.” Scientists also recently discovered that in some cases even black holes may heal. Did the radiologist also see this “new lesion” on your follow up MRI?

A lesion could have perfectly met all the criteria of MS leading the radiologist and neurologist to suspect Multiple Sclerosis. The neurologist should have considered the MRI results with the other evidence pointing towards MS. It is unlikely that your neurologist alone supported the diagnosis for MS. I remember 2 different neurologists tell me if another lesion appeared on the MRI they would immediately diagnose me with MS.

If you have MS, I’m glad you were on a MS therapy even though it came with a price. The MS Society does believe and support a patient being on MS therapies as early as possible. As someone who has been declared “permanently disabled and unable to work” I wish I could go back and take 1 more shot, 1 more pill, 1 less beer and 1 more apple if you know what I mean.

I can also understand if you don’t have MS that you would be furious/hurt/crushed/etc. Not having MS would also be a wonderful reason to celebrate! I hope you get the opportunity to celebrate and then your medical team can focus on the appropriate therapy.

I wish you well ... please let us know how things progress.

[getoutside]

Nope. Not MS

I realize that most who first saw my post will not see how it all turned out in the end. It took this long to reach a conclusive diagnosis: CNS Vasculitis. I had an LP, MRI, and an EEG.

The EEG came back normal. My LP came back negative for MS BUT I do have white blood cells in my spinal fluid which is indicitive of vasculitis. My MRI came back showing 10 new lesions. However, these lesions and all my other lesions are not typical MS lesions. They are much smaller and in the area of the brain that vasculitis typically appears. It is vasculitis.

I can now stop injecting myself everyday! I am so happy about that!

In my situation, the LP supported the vasculitis diagnosis not the MS diagnosis. So, I still advocate the LP in cases like mine (and an MS specialist or neurologist who knows the difference between MS and Vasculitis lesions). Best wishes to all!!!

[aspen]

CNS vasculitis/PACNS -- mimic of MS.

Thank you for returning to update -- my differential dx (still in limbo) is low-grade CNS vasculitis. I did some online research and found PACNS (primary angiitis of the central nervous system) -- my symptoms line up pretty well, although less so the bloodwork (although apparently with the CNS version, you don't necessarily get the same bloodwork results).

I believe my neuro is still leaning towards ms but recently I found a little patch of what the doc called vasculitis on my ankles. My doctor said it was localized (and I'd been trekking through dry weeds before) so maybe it's nothing. Just enough to muddy the waters.

PACNS is a mimic for ms that is incredibly rare -- and to some extent all doctors do the "if you hear hoofbeats, think horses, not zebras" -- just like at the beginning of the ms dx process, where everything is blamed on anxiety, or vitamin levels.

I do think more people should be aware of this mimic though, from my reading. The thing that concerns me -- the ms dx process is so slow ... and the vasculitis process CAN move quickly and have way worse outcomes. i suppose that in that case, it would be dxed more quickly and it would not act as a mimic.

May I ask what, if anything, is being done to treat it? I've done some reading, and all I see is steroids.

Very timely of you to post today; thank you! How are you feeling now?