MS or Tumor?

[mamarama]

Hello everyone,

Thank you in advance for your time. I'm 31/F with 3 kids (4,2, 9 months). I'm having some strange symptoms that began right after my last baby was born. These symptoms were up until 1 month ago were called "anxiety" by a neurologist who I recently stopped seeing. One month ago, I got a second opinion by a neurosurgeon who found a small right-sided skull-based tumor on my MRI in my paracavernous sinus. This was on a high-resolution MRI from April, while the low-resolution MRI in early Dec was completely clean.

My current neurologist/neurosurgeon do not think that the tumor's location explains everything, especially since my symptoms are bilateral. Although my MRI is clean (FLAIR showed no white-matter lesions, and only abnormality was the mass), they are still keeping MS on the table.

My symptoms:
Vision problems: first was 4 days after delivery, when I headed back to hospital because my vision was "zig-zagged". Clean CT scan in ER. For months after I had "optical migraines" and face pain. 3 months post-partum I had stabbing pain in both eyes, problem with peripheral vision in both eyes, and my earaches started. My peripheral vision has recovered in my left eye, with my right eye still showing some deficits. In general, my right eye just seems darker. I still have pains in my eyes daily- 75% right side. When the pain hits, my eyes get blurry.
Earache since November (75% right). The earache is probably the most consistent and painful feature of this all.
Clean MRI in December (low-resolution.) They did the orbitals and saw no optic neuritis.

I've also had pain in my neck, arms, hands and feet.
Additionally, I've had trouble swallowing- mostly liquids- which I sometimes "breathe" in. I've had a few times when liquids went up my nose while swallowing.

My gag reflex has gone away and my "open mouth and say ah" reflex is bad- really not much moves when I do it.
I also have trouble tasting spicy food- I put some wasabi on my tongue and NOTHING happened.
Minor balance issues- I nearly fell when doing the "walk the line" drunk test at neurologist's office.

I have a spinal tap coming up in a few weeks, as well as additional MRIs of the head and spine. I'm also getting referred to another neurosurgeon who is a specialist in skull-based tumors, for a biopsy. This is all alarming to me because I've always been extremely healthy. I am on the thin side, don't smoke/drink, take a multi-vitamin, etc...
Thoughts? Do these symptoms, which seem too general for the tumor, fit into an MS presentation?

Thank you.

** 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. **

[onlyairfare]

It's hard for me, or likely any of us on MSWorld, to say if your symptoms fit MS or not. It does seem they may be more generalized than what would be produced by a unilateral paracavernous sinus lesion.

Generally "relapse" symptoms last at least 24 hours, and I can't tell from your description how long your various symptoms all last.

Also, it is possible to have migraine headaches that seem like optic neuritis, or vice versa. It is also possible to have migraine, MS with or without optic neuritis, and a brain tumor. Sometimes an MS lesion can look like a brain tumor.

I think it is a good idea to get the additional testing such as a spinal tap. Perhaps a Visual Evoked Potential test would be helpful. Seeing a neurosurgeon who specializes in skull-based lesions is also a very good idea, since such surgery requires additional training, and not every neurosurgeon is capable of properly using the specialized equipment needed.

On my initial MRI to confirm my MS diagnosis, a skull-based rain tumor showed up (meningioma, a benign brain tumor). I'd also had a long past history of optic neuritis, and migraine headaches that caused symptoms very similar to ON. It took about 6 months to get everything all sorted out, and that was a very long 6 months! I feel for what you are going through.

I hope that all your symptoms can be diagnosed and properly treated soon. Let us know how you are doing - this website is a place where people care, and we wish you the best.

[mamarama]

Update!

So an update, and some questions! Thank you so much for your advice last time.

LP in June 2014 showed o-bands in CSF and serum, also red blood cells. No mention was given of how many "bands" specifically, only noting "numerous." Neuro concluded that this was a bloody tap, likely not MS. Also, a second MRI showed no distinct tumor! Very surprising given confidence of other doctor, but I wasn't going to complain. They also found no lesions.

July of 2014, I got abruptly "sick." I repeatedly lost control of my bladder for about a month, had wobbly knees, started getting double vision, and had really bad pain shooting down my arms into my funny bones. Only told neuro about bladder, who sent me to primary care, who said it was from having babies. Bladder abruptly cleared up, I started gabapentin and physical therapy for pain, and went back to life as normal.

Over the next few months I continued having the double vision, so I went to an outside ophthalmologist who only saw a slight wander of the eye, but scheduled a visual fields test since I had abnormal fields tests before and was smashing into things while walking.

Fields test was abnormal, so I got sent to neuro at outside hospital. I scheduled with a highly recommended migraines specialist, with a 4 month wait, and continued seeing regular neuro for migraines.

Early February, 2015, my leg problem came back with a vengeance. I had uncontrollable shaking and jerking in my right knee while walking at normal pace. Regular neuro (via e-mail, without seeing me) said it likely wasn't a neuro problem, but to go to urgent care.

Urgent care doctors scratched their heads, gave me strength tests, and said it was weakness. I couldn't walk on heels for them, and my quads were shaking during the squat test. Within the week, the problem spread to my other legs and to my ankles! My ankles were flying out when I was walking. The double vision also came back.

I had a total of 5 appointments for my legs, getting routed from urgent care to primary care to ortho and physical medicine. Ortho and physical medicine both said, go to neuro, and both noted mild hyperreflexia.

In the midst of this, I had an appointment with the migraines neuro. I was clearly panicked and hysterical, since my legs and eyes breaking at once with no explanation was absolutely terrifying. He was very kind and comforting, examined me, and made some vague comment about possibly there being something wrong with my cerebellum. My husband saw Babinski's sign in both feet, and I felt my hands shaking during the finger-to-nose test.

After recovering greatly, I finally went this week to regular neuro for followup for knee weakness for an EMG/NCS. At my husband's insistence, I mentioned to him the cerebellum comment from other doctor and the Babinski sign. He humored me by testing, and seemed a bit surprised to find Babinski's sign in right foot, and shaking in 1 hand. I also did poorly on the cerebellum tests. This was about 6 weeks after the migraines neuro appointment, and over 2 months after the onset of knee problems. EMG/NCS was normal.

My most recent fields test was great last month, but I also got the double vision tested 1 month ago. The ophthalmologist at regular hospital said it was pretty bad, a muscle problem and correctable with surgery, but how could it be muscle if it came and went before?

Regular neuro has scheduled a lumbar MRI, which hasn't been scanned yet.

My questions:
1. How do they discriminate between neuro double vision and the muscle double vision? Regular neuro said he "defers to ophthalmology" without even checking my eyes. I am supposed to go back in 6 months for follow-up with ophthalmology, or sooner if it gets worse.
2. Does Babinski's sign come and go over 6 weeks? My husband isn't a neurologist but is a pretty smart cookie. In the right foot it was still present for both neuros. My right leg still has trouble walking.
3. Any possible MS mimics that should be checked for? So many doctors have mentioned that this looks like MS except for imaging. I have been hoping this was all psychogenic, but this is looking more and more unlikely.

It's hard for me, or likely any of us on MSWorld, to say if your symptoms fit MS or not. It does seem they may be more generalized than what would be produced by a unilateral paracavernous sinus lesion.

Generally "relapse" symptoms last at least 24 hours, and I can't tell from your description how long your various symptoms all last.

Also, it is possible to have migraine headaches that seem like optic neuritis, or vice versa. It is also possible to have migraine, MS with or without optic neuritis, and a brain tumor. Sometimes an MS lesion can look like a brain tumor.

I think it is a good idea to get the additional testing such as a spinal tap. Perhaps a Visual Evoked Potential test would be helpful. Seeing a neurosurgeon who specializes in skull-based lesions is also a very good idea, since such surgery requires additional training, and not every neurosurgeon is capable of properly using the specialized equipment needed.

On my initial MRI to confirm my MS diagnosis, a skull-based rain tumor showed up (meningioma, a benign brain tumor). I'd also had a long past history of optic neuritis, and migraine headaches that caused symptoms very similar to ON. It took about 6 months to get everything all sorted out, and that was a very long 6 months! I feel for what you are going through.

I hope that all your symptoms can be diagnosed and properly treated soon. Let us know how you are doing - this website is a place where people care, and we wish you the best.

[SNOOPY]

Hello mamarama,

LP in June 2014 showed o-bands in CSF and serum

If your LP shows bands in both CSF and serum this does not support a diagnosis of MS. If bands are in both you may want to discuss what possibilities would cause those results.

If you have double vision and your MRI is clear then another possibility would be Myasthenia Gravis/Ocular Myasthenia. There is a blood test for Myasthenia Gravis (MG) although a negative result does not rule out MG.

How do they discriminate between neuro double vision and the muscle double vision? Regular neuro said he "defers to ophthalmology" without even checking my eyes.

The eyes are the specialty of an Ophthalmologist not a Neurologist.

I have double vision, I also have a long standing Multiple Sclerosis diagnosis. My MRI does not show evidence that indicates MS as the cause but, in my case, MS is the most likely cause. However, I am being monitored for Ocular Myasthenia as a possible cause to my double vision. My double vision only affects one muscle and only when looking to the right.

Information about Myasthenia Gravis:
http://www.medicinenet.com/myastheni...is/article.htm

Any possible MS mimics that should be checked for?

Other conditions to rule out Per the National MS Society:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

Does Babinski's sign come and go over 6 weeks?

I can only answer this based on my own personal experience.

Mine does not come and go. Over a 30 year time span I have always had a positive Babinski.

[mamarama]

Thank you, Snoopy! I will ask the next time I go. Neuro said he will schedule a repeat cranial MRI if the next spine MRI is clear, so perhaps that will give some more answers about the cause of weakness/reflex changes/double vision.

I'm a bit nervous about the double vision cause also because a neurosurgeon last year mentioned a possible 6th nerve palsy last year, and I felt my eyes making involuntary movements/shutting when doing the eye-tracking test at migraines neuro only 2 months ago. Either way, I would go seek a second opinion before any surgery, and am hoping that since my eyes are getting better now, that surgery won't even be seriously discussed again!

I'll update this thread, in case anything does get figured out. I assume this limbo situation isn't uncommon, and it might be helpful for people to know which MS Mimic (if any!) this turns out to be. My main fear is that they won't figure the cause out ever, and that this thing will come back again stronger next time.

Good luck to everyone in limbo, and thank you for your help to everyone else!

[mamarama]

Another update...

I wanted to update in case anyone else is in my situation. Still no DX. I got scanned yet again (brain) and the only finding was a hyperintensity extra-axial to the pons. No contrast was used, 1.5 T machine. Apparently, this hyperintensity was present and was more hyperintense on the older scans as well (1 year prior), but they missed it twice before.

I was a bit irritated because I found this out only after reading the report. My old neuro had just reported to me... "Great news! No change!" I found that quite deceptive. I politely asked him what the hyperintensity was that I had read of in the report, and he just said that it was a nerve or vessel but wasn't important.

In 2 months, I start another round of doctors appointments (migraines neuro + opthalmology) at our local university hospital with the new neuro, who had previously thought I had a problem with my cerebellum. The problem is that I'm now pregnant with another baby, so scanning is out of the question. I'm also going back to the old neuro because I'm delivering my baby at that hospital, but it is quite hard for me to trust someone who went to med school, but talks like a lawyer.

Anyway, good luck to everyone in limbo! I don't know what I have, but will continue to update this thread periodically in case it gives hope/answers to someone else in my shoes.

Thank you, Snoopy! I will ask the next time I go. Neuro said he will schedule a repeat cranial MRI if the next spine MRI is clear, so perhaps that will give some more answers about the cause of weakness/reflex changes/double vision.

I'm a bit nervous about the double vision cause also because a neurosurgeon last year mentioned a possible 6th nerve palsy last year, and I felt my eyes making involuntary movements/shutting when doing the eye-tracking test at migraines neuro only 2 months ago. Either way, I would go seek a second opinion before any surgery, and am hoping that since my eyes are getting better now, that surgery won't even be seriously discussed again!

I'll update this thread, in case anything does get figured out. I assume this limbo situation isn't uncommon, and it might be helpful for people to know which MS Mimic (if any!) this turns out to be. My main fear is that they won't figure the cause out ever, and that this thing will come back again stronger next time.

Good luck to everyone in limbo, and thank you for your help to everyone else!

[22cyclist]

So an update, and some questions! Thank you so much for your advice last time.

LP in June 2014 showed o-bands in CSF and serum, also red blood cells. No mention was given of how many "bands" specifically, only noting "numerous." Neuro concluded that this was a bloody tap, likely not MS. Also, a second MRI showed no distinct tumor! Very surprising given confidence of other doctor, but I wasn't going to complain. They also found no lesions.

July of 2014, I got abruptly "sick." I repeatedly lost control of my bladder for about a month, had wobbly knees, started getting double vision, and had really bad pain shooting down my arms into my funny bones. Only told neuro about bladder, who sent me to primary care, who said it was from having babies. Bladder abruptly cleared up, I started gabapentin and physical therapy for pain, and went back to life as normal.

Over the next few months I continued having the double vision, so I went to an outside ophthalmologist who only saw a slight wander of the eye, but scheduled a visual fields test since I had abnormal fields tests before and was smashing into things while walking.

Fields test was abnormal, so I got sent to neuro at outside hospital. I scheduled with a highly recommended migraines specialist, with a 4 month wait, and continued seeing regular neuro for migraines.

Early February, 2015, my leg problem came back with a vengeance. I had uncontrollable shaking and jerking in my right knee while walking at normal pace. Regular neuro (via e-mail, without seeing me) said it likely wasn't a neuro problem, but to go to urgent care.

Urgent care doctors scratched their heads, gave me strength tests, and said it was weakness. I couldn't walk on heels for them, and my quads were shaking during the squat test. Within the week, the problem spread to my other legs and to my ankles! My ankles were flying out when I was walking. The double vision also came back.

I had a total of 5 appointments for my legs, getting routed from urgent care to primary care to ortho and physical medicine. Ortho and physical medicine both said, go to neuro, and both noted mild hyperreflexia.

In the midst of this, I had an appointment with the migraines neuro. I was clearly panicked and hysterical, since my legs and eyes breaking at once with no explanation was absolutely terrifying. He was very kind and comforting, examined me, and made some vague comment about possibly there being something wrong with my cerebellum. My husband saw Babinski's sign in both feet, and I felt my hands shaking during the finger-to-nose test.

After recovering greatly, I finally went this week to regular neuro for followup for knee weakness for an EMG/NCS. At my husband's insistence, I mentioned to him the cerebellum comment from other doctor and the Babinski sign. He humored me by testing, and seemed a bit surprised to find Babinski's sign in right foot, and shaking in 1 hand. I also did poorly on the cerebellum tests. This was about 6 weeks after the migraines neuro appointment, and over 2 months after the onset of knee problems. EMG/NCS was normal.

My most recent fields test was great last month, but I also got the double vision tested 1 month ago. The ophthalmologist at regular hospital said it was pretty bad, a muscle problem and correctable with surgery, but how could it be muscle if it came and went before?

Regular neuro has scheduled a lumbar MRI, which hasn't been scanned yet.

My questions:
1. How do they discriminate between neuro double vision and the muscle double vision? Regular neuro said he "defers to ophthalmology" without even checking my eyes. I am supposed to go back in 6 months for follow-up with ophthalmology, or sooner if it gets worse.
2. Does Babinski's sign come and go over 6 weeks? My husband isn't a neurologist but is a pretty smart cookie. In the right foot it was still present for both neuros. My right leg still has trouble walking.
3. Any possible MS mimics that should be checked for? So many doctors have mentioned that this looks like MS except for imaging. I have been hoping this was all psychogenic, but this is looking more and more unlikely.

rrrr
1. It is quite easy for an ophthalmologist to tell whether your souse is aquired or recent due tp MS, car injuey oe orhhwe rthing (ms incls. Sports injuries tend to ccause a ;pst of tthese.

Lisa