Doctor Called .... NMO Antigen Negative .... What is next???

[imrachelk]

Doctor called today ...

NMO Antigen came back negative ... PTL )

He said that the LP came back negative too however, that I do have 2 small lesions on my brain MRI and one on spine ... he is not 100% what is going on is MS but he is not100% sure what is going on is NOT MS ... how does that sound???

He wants to sit with the radiologist and go over the MRI's again ..

He knows what is going on is for sure Autoimmune ...

He is very bothered by the 2nd case of the ON in less than 24 months ...

I am going to see him Wednesday at 1p ...

Soooo WHAT THE HELL is going on my body ...

[22cyclist]

For this one, I think you are just going to have to wait and let him figure it out. Since your brain lesions are so small, he may make you wait it out a little while longer. Hard to say, but you don't have to wait long to find out. It is good he is sitting with the neuroradiologist to talk over your films. Hopefully together they can come up with an answer.

Take care
Lisa
Moderation Team

[Marco]

Hi Rachel!

Fortunately, the NMO antigen test is fairly accurate. Certainly better than anything Lyme's or MS has.

Typing about inaccurate test ... welcome to the Lumbar Puncture. Roughly a third of people diagnosed with MS have a negative LP.

Lesions can be caused by: high blood pressure, trauma, stress, infection, stroke, my sister's cooking, fever, MS, etc.

The radiologist should indicate if the lesion characteristics and location are consistent with MS.

It actually, sounds like your doctor is being HONEST with you and that isn't a bad thing. A lot better than smiling to your face and writing "patient is having psychologically manufactured symptoms, but I need the copay so rescheduling next week."

Here is a link to the NMSS about possible MS
http://www.nationalmssociety.org/abo...-ms/index.aspx

- You might ask if the doctor is willing to forward your information to MS specialist for a consultation. Many times your records can get in weeks before you can.

- He could refer you to a neuro opthamologist about ON.

- I would ask your neurologist if you meet the criteria for Clinically Isolated Syndrome. http://www.nationalmssociety.org/abo...cis/index.aspx

The MS Society would suggest active treatment for CIS patients. You could always stop it later, but you could at least discuss it with your neurologist.

For now, write down all your questions and prioritize them prior to your appointment. I then take copies of the questions for everyone in the room, in large font with space for notes.

You are going through a rough time so I am glad you are still reaching out to the MS community. As someone that was diagnosed, undiagnosed, rediagnosed, downgraded diagnosed then rediagnosed back to MS I understand how the process can be trying.

[imrachelk]

Hi Rachel!

Fortunately, the NMO antigen test is fairly accurate. Certainly better than anything Lyme's or MS has.

Typing about inaccurate test ... welcome to the Lumbar Puncture. Roughly a third of people diagnosed with MS have a negative LP.

Lesions can be caused by: high blood pressure, trauma, stress, infection, stroke, my sister's cooking, fever, MS, etc.

The radiologist should indicate if the lesion characteristics and location are consistent with MS.

It actually, sounds like your doctor is being HONEST with you and that isn't a bad thing. A lot better than smiling to your face and writing "patient is having psychologically manufactured symptoms, but I need the copay so rescheduling next week."

Here is a link to the NMSS about possible MS
http://www.nationalmssociety.org/abo...-ms/index.aspx

- You might ask if the doctor is willing to forward your information to MS specialist for a consultation. Many times your records can get in weeks before you can.

- He could refer you to a neuro opthamologist about ON.

- I would ask your neurologist if you meet the criteria for Clinically Isolated Syndrome. http://www.nationalmssociety.org/abo...cis/index.aspx

The MS Society would suggest active treatment for CIS patients. You could always stop it later, but you could at least discuss it with your neurologist.

For now, write down all your questions and prioritize them prior to your appointment. I then take copies of the questions for everyone in the room, in large font with space for notes.

You are going through a rough time so I am glad you are still reaching out to the MS community. As someone that was diagnosed, undiagnosed, rediagnosed, downgraded diagnosed then rediagnosed back to MS I understand how the process can be trying.

Thank you ... he did suggest that I possible go see Dr. Edwards who is an MS specialist - however, he is out of network for me and VERY expensive.

I am glad he is being honest too ...

Basically my symptoms are they MS - I have no clue because really I never even googled MS until a few weeks ago ...

Some of these are embarrassing but I am going to be 100% honest -

1. Optic Neuritis first onset Jan 2012 - with vision change and color changes - say an neuro opto eye doctor (that was out of network) eye cleared up about 8 weeks later

2. I have peed the bed twice in the last year ... bad dream?? to hot?? I have zero clue but seriously who does that 33???

3. I have bowel issues - when I have to go I have to go - move out of my way because I might not make it ...and there have been times I didn't make it ....who does that in there early 30's???.. it comes on out of the blue - went to the gastro had a colonoscopy it was all clear

4. When I have to pee I have to pee but it is like my brain does not tell me until I am about to pee my pants ... and then I pee and I don't empty my bladder ... I never sleep through the night cause I get up to pee 2 or sometimes 3 times ... maybe I just need that "I gotta go right now pee medicine"

5. My toes and just my toes are freezing ... circulation issues?? am I just getting old??

6. My hands and arms fall asleep while I am sleeping on my back ... not all the time but sometimes

7. In the morning the bottom of my feel getting tingly ... circulation???

8. Optic Neuritis AGAIN Feb 2013 ....

9. 2 tiny and I mean tiny lesions on my brain (2x2)

10. with the ON this time came the weak legs

11. the painful muscles - however, my neuro says this is NOT a normal symptom of MS ...

12. My muscles in my legs from my butt down twitch ... (are these muscle spasms??) they don't hurt but they are annoying

13. My right hand is stiff - almost a numbness feeling

14. I drop EVERYTHING

15. before I left work it was like my brain was not working - my words would not come out of my mouth in a meeting ... not matter how hard I tried.

16. I am tired ... I feel like I can sleep all darn day long

17. My vision is blurry and I have had some double vision but that is because of the ON


My friend has this same doctor and she says he is a good doctor but feels like sometimes that if you don't ask the right questions he is just in and out ... I hoping I can come up with the correct questions to ask ... I Just have no clue what to ask except for did I dream all this up?? and who gets ON twice??

You could tell today he was worried - I mean he called me on a Sunday ...

I am very thankful that the NMO came back negative ... I don't want that disease and I pray that people who do have it that the medicine is working.

This is the first time I am seeing this doctor ... besides in the ER ...

What do I want to ask??

[22cyclist]

You have some MS symptoms. Especially the laying down to sleep and having symptoms. This is pretty common in MS and can have to do with being hot, especially if it clears with getting up. It can also have to do with positioning. I know you have one spinal lesion. The ON alone, or the spinal lesion should qualify you for at least CIS since you have had some weakness after your last ON.

Be sure to write this stuff down. A neurologist is looking for exacerbations or feelings of numbness/weakness/tingling that have lasted >24 hours and have been constant. We know you have had that with the ON. Have you had that with other symptoms?

Ask you neurologist if you qualify for clinically isolated syndrome if you do not meet the MS criteria since your lesions are so small.

Ask him about your symptoms and if medications would help. I am talking about general meds, not DMDs.

Be sure to ask him about your cognitive problems as this is a major symptom in MS that gets forgotten in the exam.

Good luck and tell him everything, even the small stuff that you might think insignificant. Oh, and the double vision needs to be emphasized. You should not have double vision with ON.

Lisa
Moderation Team

[shaden65]

he is not 100% what is going on is MS but he is not100% sure what is going on is NOT

MY CONSULT WITH THE NEUROLOGIST WAS SIMILAR~~~COULDN'T SAY YES, BUT COULDN'T SAY NO; DID SAY, HOWEVER, THAT WHEN I WAKE IN 6 MONTHS AND AM BLIND IN ONE EYE, I SHOULD COME BACK FOR FURTHER STUDIES!!! I'M CHANGIN' ~OLOGISTS!!!

~~~IT'S ALWAYS SOMETHING~~~

[MSer102]

Fortunately, the NMO antigen test is fairly accurate. Certainly better than anything Lyme's or MS has.

No that's not exactly true! The NMO test is very specific which means that if it finds the antibody its almost 100% accurate.

BUT the false negative rate is at least 30%. I read that even some people with classic textbook NMO never test positive. So there are people walking around with a disease that can kill them and they don't even know because the false negative rate is so high. That doesn't sound at all like an accurate test to me! A negative NMO test doesn't rule out NMO.

I think that's a pretty good example of why people shouldn't be asking questions about NMO in an MS forum - waaay too many false statements about it.

[imrachelk]

No that's not exactly true! The NMO test is very specific which means that if it finds the antibody its almost 100% accurate.

BUT the false negative rate is at least 30%. I read that even some people with classic textbook NMO never test positive. So there are people walking around with a disease that can kill them and they don't even know because the false negative rate is so high. That doesn't sound at all like an accurate test to me! A negative NMO test doesn't rule out NMO.

I think that's a pretty good example of why people shouldn't be asking questions about NMO in an MS forum - waaay too many false statements about it.

wait, just to say I wasn't asking questions about NMO in an MS forum ... I have been very careful not to ask about the NMO ....

[MSer102]

I'm sorry - I didn't mean you personally. I meant in general. Basing a question on something else is kind of like asking a question cuz it can bring up a question. In this case somebody thought of a question because it caused them to say something about the NMO test that turns out isn't true.

I had two episodes of optic neuritis a year apart so my doctor had me do the NMO test. That's when I studied up about it and I wasn't happy to read that the test has a high false negative rate. My doctor told me that a negative result is of no help because it can't be trusted. After that you have to go by what the disease looks and acts like. Mine is looking like MS instead of NMO so it looks like I don't have it. (whew!)

Does it scare you that you might have NMO even tho your test was negative?

[imrachelk]

I'm sorry - I didn't mean you personally. I meant in general. Basing a question on something else is kind of like asking a question cuz it can bring up a question. In this case somebody thought of a question because it caused them to say something about the NMO test that turns out isn't true.

I had two episodes of optic neuritis a year apart so my doctor had me do the NMO test. That's when I studied up about it and I wasn't happy to read that the test has a high false negative rate. My doctor told me that a negative result is of no help because it can't be trusted. After that you have to go by what the disease looks and acts like. Mine is looking like MS instead of NMO so it looks like I don't have it. (whew!)

Does it scare you that you might have NMO even tho your test was negative?

what scares me is that my hands keep falling asleep and being totally numb when I am sleeping ....

what scares me is having no *** answers to anything ...

what scares me is that I am a single mom to a 4 year old and my vision this time doesn't seem to be getting better ....

what scares me is there a test that is suppose to tell you what the heck is wrong but it has a 30% false negative result ....

yes I am scared to death but I know that God has a plan for us and really all I can do is educate myself and pray and pray hard .....

Today is doctor day for me so hopefully I will get more answers.

thank you!!!

[Lilacs7]

I am going through a similar experience. Have had optic neuritis about five times in the past six months. Just started rebif, and the ON still keeps coming back. Tested negative on lumbar puncture for NMO, which I guess doesn't tell me much. No brain lesions consistent with MS. Have done about 4 rounds of IV Solumedrol followed by oral prednisone. Next up is plasmapheresis.

[Whimpurr]

I would strongly advise you to at the very least, take copies of your MRIs to an MS SPECIALIST!! The radiologist from the general neurologist saw only 2 white matter lesions in my brain and totally missed 4 in my cervical spine (which tend to be more symptomatic) and he also missed an ACTIVE lesion in my Cspine.

I did not give up and was determined not to fall into the wait and see mode. I found a highly recommended MS Specialist and on my first visit, he basically burst into the exam room saying that he could dx me with MS just by my MRIs alone. He is not only an MS Specialist but is also licensed to read MRIs himself.

Please take my experience as a lesson to seek a true specialist in the field.

[Grace53a]

A negative NMO IgG (AKA Anti Aquaporin-4 Antibody) test result cannot rule out NMO. A positive is definitive for the disease but there is a 30% chance of a false or masked negative.

Respectfully,
Grace (NMO+ since 2005)