Possible MS, New symptoms, Saw Neurogist... Please help/thoughts

[Kyhu3]

Hello All.. Thanks in advance for reading my post. About 2 to 2.5 years ago I developed weird sensations on the R side of my face and noticed blurred vision in my R eye. I went to the ER as it did not resolved in 24 hours and I was extremely scared. A CT scan and MRI were completed of my brain and results were negative. I was discharged and an appointment with a neurologist was made.

I saw the neurologist within the next week and he reviewed my MRI and did a complete exam. He said my exam looked great and he did not see anything on the MRI either.

I explained to him that I had a ton of pressure, very localized above my right eye and felt tightness into both legs. My legs felt very heavy.
I then developed some muscle twitching. A Nerve conduction test and EMG was completed. Results negative.

The vision problem did resolve however I did have an appointment with a neuro-opthlamologist and she saw no inflammation or signs of past or current ON.

As time has gone on, I continued to have intermittent dizzy spells, heavy sensations in my legs and feeling of weakness and clumsiness on the R side. I have continued to follow up with my neuro, however he has now recently moved out of area.

I did not seem to be getting anywhere with questions and I made an appointment with a MS specialist in a large city near by I had to wait a long time to get. He did an exam but was unable to review my MRI's as they would not open on his computer. He told me they would be sent away and he would look at them at a later time. He did not seem to interested with doing any more with me but did order some type of visual field exam and said "if I wanted" he would do an MRI of cervical and thoracic spine.

I did have the visual tests done but never heard anything back in regards to results.


Fast forward till now. About one week ago I had the dizziness return, I then noticed a sensation of my vision jumping and difficulty reading. I went to my PCP and he send me to the ER because I had nystagmus. Another MRI of my brain with and without contrast was completed. No lesions no tumors.

I am sitting here now scared to death, the neuro said the last thing he could do would be an LP. I am so scared this nystagmus is never going away. He feels it could be due to an inner ear problem. but at the same time as the dizziness I have also had weird sensations into my legs and R side of my face.

Thoughts?
I am currently in PT for vertigo.. taking some meds.. but I am scared this needs to be treated more aggressively or I will have vertigo forever.
Please help.
Thanks.

** 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. **

[SNOOPY]

Hi Kyhu3,

I am currently in PT for vertigo.. taking some meds

You should check the side effects of any medications you are taking. Sometimes we believe we are having new symptoms, of something, when in reality a medication(s) we are taking is causing side effect symptoms.

All of your tests to date have come back normal. Without anything indicating a medical problem it is difficult if not impossible to receive a diagnosis of Multiple Sclerosis.

I did have the visual tests done but never heard anything back in regards to results.

You need to call the Dr. who did the testing to find out if anything came back abnormal.

He feels it could be due to an inner ear problem

Did he refer you to an ENT? If not that would probably be a good place to start so you can rule in/out any inner ear problem.

You seem to be grouping all of your symptoms together, assuming everything is caused by your belief you have Multiple Sclerosis. It's possible it's not MS (or maybe it is). It's also possible your vision problems are due to something other than MS. Vision problems can also cause balance and vertigo problems.

[Kyhu3]

Hi Kyhu3,



You should check the side effects of any medications you are taking. Sometimes we believe we are having new symptoms, of something, when in reality a medication(s) we are taking is causing side effect symptoms.

All of your tests to date have come back normal. Without anything indicating a medical problem it is difficult if nnot impossible to receive a diagnosis of Multiple Sclerosis.



You need to call the Dr. who did the testing to find out if anything came back abnormal.



Did he refer you to an ENT? If not that would probably be a good place to start so you can rule in/out any inner ear problem.

You seem to be grouping all of your symptoms together, assuming everything is caused by your belief you have Multiple Sclerosis. It's possible it's not MS (or maybe it is). It's also possible your vision problems are due to something other than MS. Vision problems can also cause balance and vertigo problems.

In regards to the meds. I started taking them because of the nystagmus.
I was not taking any prior.
So I don't think it would be a side effect.

Also. The MRI of my has always been negative.
Is it possible to have vision changes or nystagnus from lesions below the brain ?

[SNOOPY]

Also. The MRI of my has always been negative.
Is it possible to have vision changes or nystagnus from lesions below the brain ?

Brainstem lesions.

Kyhu3,

You did not say if you have seen an ENT. I would suggest you follow your Neurologists advice about your symptoms being inner ear related. Getting focused on one disease, in this case MS, means the real cause for your symptoms may go undiagnosed.

My thought (right or wrong) goes to a another disease --- Meniere's Disease:
http://vestibular.org/menieres-disease

[Kyhu3]

Brainstem lesions.

Kyhu3,

You did not say if you have seen an ENT. I would suggest you follow your Neurologists advice about your symptoms being inner ear related. Getting focused on one disease, in this case MS, means the real cause for your symptoms may go undiagnosed.

My thought (right or wrong) goes to a another disease --- Meniere's Disease:
http://vestibular.org/menieres-disease

Thanks again for your reply. In the exact words of my ENT " no one around here ENT wise treats vestibular diseases even though they should". So I guess he Is treating it himself.
What I get scared the most with is the nystagmus is not postional. It is constant.

[Teekybird]

Since you have been pretty thorough in getting everything checked out, I would recommend getting the thoracic (neck) MRI with contrast.

As Snoopy indicated, your symptoms may be coming from some other problem/condition. That 'could' be why all of the MS testing keeps coming back negative. However, to continue to try to get a complete picture, I personally think it would be worth it to also get the neck MRI.

I've never had a LP. From what I have read and understand about the LP, it sort of seems like putting your body through a somewhat stressful procedure that may or may not really be conclusive.

Maybe seeing another ENT--or going to the larger city to see an ENT--might be a good idea. To have someone tell you they do not treat a condition that you may have would be frustrating.

Good luck to you. It is frustrating to be experiencing symptoms and not really know to what they can be attributed.

[jreagan70]

The vision problem did resolve however I did have an appointment with a neuro-opthlamologist and she saw no inflammation or signs of past or current ON.

How much time passed between when your vision got better and you saw the neuro-ophthalmologist? What tests did the ophthalmologist do and/or have you do? (You mentioned a visual field test in another part of this thread. A neuro-ophthalmologist would almost certainly have had you do a visual field test.) What were the results? Did she look at your brain MRI herself?

I made an appointment with a MS specialist in a large city near by I had to wait a long time to get. He did an exam but was unable to review my MRI's as they would not open on his computer. He told me they would be sent away and he would look at them at a later time. He did not seem to interested with doing any more with me but did order some type of visual field exam and said "if I wanted" he would do an MRI of cervical and thoracic spine.

I did have the visual tests done but never heard anything back in regards to results.

Did the neurologist ever look at your MRIs?

It's rare for a neurologist to order a visual field test. (The neuro-ophthalmologist would almost certainly have had you do a field test of some kind.) Neuros are much more likely to order a visual evoked potential (VEP). How long ago was the test done? Did you call the office to get test results?

About one week ago I had the dizziness return, I then noticed a sensation of my vision jumping and difficulty reading. I went to my PCP and he send me to the ER because I had nystagmus. Another MRI of my brain with and without contrast was completed. No lesions no tumors.

I am sitting here now scared to death, the neuro said the last thing he could do would be an LP. I am so scared this nystagmus is never going away. He feels it could be due to an inner ear problem. but at the same time as the dizziness I have also had weird sensations into my legs and R side of my face.

This is where I got lost. When did you see the neurologist? If you saw the neurologist, did you talk about your previous MRIs and the visual test you did?

With the onset of nystagmus, have you made an appointment to see the neuro-ophthalmologist? As long as your eyes are involved, she should also examine you. Now would be an excellent time to see her, taking your latest MRI with you.

I am scared this needs to be treated more aggressively or I will have vertigo forever.

What kind of treatment are you thinking of?

Is it possible to have vision changes or nystagnus from lesions below the brain ?

Even considering that "vision" is a pretty broad term, the answer is no. It's not possible because everything involved with the process of vision takes place inside the head. All of the optical elements are in the head, on or in the eyes themselves, which are not below the brain. The optic nerves are part of the brain. The phenomenon of light changing into electricity that travels across the brain to areas that interpret the signals takes place in the brain. The nerves that control the various eye muscles all originate in the brainstem.

The brainstem isn't below the brain -- it is the brain.

The vestibular system is also contained entirely inside the head and not below the brain. The vestibulocochlear nerve comes out of the brainstem.

It would be good if you could verify that a pertinent specialist in addition to the radiologist looks at your MRIs. And maybe the more, the better.

And, after you see the neuro-ophthalmologist, it might be beneficial to see an ENT at a major medical center and not just your local ENT.