Is it MS?

[happytexas]

I'm so frustrated at the moment. On 3/17 I lost vision in my right eye for a few minutes. EMT at work said I needed to go to the ER. I did and they started stroke protocol. The first MRI revealed right frontal periventricular white matter. The neurologist ordered a spinal MR that appeared negative. He then sent me for a lumbar puncture. I had other tests to rule out a blood clot going to my eye. When I left the hospital, I was told it was possibly a blood clot, but to wait on the lumbar puncture results. Since then, I have had a persistent headache. Last week I lost partial vision in both eyes for a few hours. I went immediately to the ophthalmologist who ran tests and determined that it was optic neuritis and said I have MS. She sent me to a neuro ophthalmologist the next day. They ran a lot of tests and reversed what the previous doctor said. They send me to a retina specialist. My tests came back negative there too. I had a follow-up with my cardiologist on Monday. He was able to pull the lumbar puncture results. I have more than 5 well defined gamma restriction bands that are not present in the serum. Now I can't get any of my doctors to call me back. I get these results and then I'm just left hanging. Anyone have any ideas?

Thanks!

[supermum_ms]

Gosh your head must be spinning!!

I truly hope you get some detailed answers and a little tiddly bit of sensitivity from your neuro on monday, so far you've had all these different medical people saying one thing and then another, and on top of that conflict and confusion, shockingly getting told over the phone by your neuro and neuro-ophthalmologist that your tests are positive for MS.....it's never easy to be told you have MS, but being told over the phone (?!) is beyond being insensitive to me.....

I'm sorry for your news, and i'm sorry for the way you heard this news, if there is anything you need, MS information, support etc please just ask, no question is off limits here and we always try to do our best to be of help!

Hugs..........JJ    

[happytexas]

I have to say that when they called it felt like a weight had been lifted. I have always known it was a possibility since  my father had a very aggressive form of MS. About three years ago I saw doctors who couldn't pin point anything on my symptoms. They didn't explore much in the way of MS. In  any case, I have enough faith that God didn't give me something I can't handle. I just want to start treatment and go on with my life. I know I can handle whatever comes my way.  I have a great support system around me.
Honestly, I was more stressed about them not calling  me with the test results than the diagnosis itself.
I'm going to face this head on.
Thanks for all of the support!
Jen

[HVAC]

Good that they have an answer. Sorry it is MS.

Alex

[happytexas]

Thanks. Nothing I can't handle. It is what it is and there is nothing I can do to change it. I have a positive attitude and a loving, supportive family.

[happytexas]

So, the neurologist and neuro ophthalmologist called this morning. Both said my tests are positive for MS. I am seeing a neurologist on Monday.

[4happygnomes]

I'm so sorry!   I'm going on almost 2 years in limbo, and although it is a terrible place to be hanging out, I can't imagine how you must feel with this all just beginning in March,  to now having a diagnosis.  Big Hugs!

Karen

[happytexas]

Thanks Karen! We will see what Monday brings. I'm sorry you have been dealing with the unknown for 2 years. Are they treating you with anything? Many prayers.
Jen

[HVAC]

I was hospitalized in 1965 as a toddler. I could not swallow. Some how they found out it was neurological, brain stem damage. They sent me to the Mayo but they could not figure it out except to say there was something neurological. At 6 years old they sent me to Duke because I had permanent double vision. THey said I had double vision as a baby. They could tell because I switch eye to eye to see and I actually do not see two things. They said the brain can only do that if you get double vision as a baby when the brain is young. They said there was nothing that could be done. I had brain stem damage.I went to neurologists until I was 16. My parents never explained and of this to me. Mostly because they did not understand it. They thought I would grow out of it. I always had cognitive problems. They put me in the slow classes. I grew up with symptoms so I just thought I was normal. At 44 my PCP did a neurological exam because she thought I might have MS. Then I started my two years of testing. I have had very little changes after childhood.

Alex

[immisceo]

A couple of observations: what you describe doesn't sound like optic neuritis, which typically begins with pain, vision/colour loss, patchiness or a combination and gets worse over a period of days or weeks and then slowly resolves over days, weeks, or months. A patient's new baseline isn't determined until a year after obvious symptoms subside. The brief episodes you describe doesn't sound compatible with what is commonly experienced.

Ophthalmologists do not diagnose MS, and it was very irresponsible for that doctor to purport to do so.

MS diagnoses can take time. I'd write down your questions and schedule an appointment with an MS specialist. The waiting game is more psychologically tricky than it is physically detrimental, as MS is generally a slow-moving condition. And it may not even be what you're dealing with.

[supermum_ms]

Hi and welcome to our little MS community,

Is this MS....MS would be one possibility, something is definitely going on but I don't don't think you've mentioned enough for MS to be at the very top of your list. Unfortunately, MS is often more complicated to diagnose than people realise, so it's not unusual for patients to be suspected of having MS for multiple years prior to being officially diagnosed.

There isn't any single test for MS, so it can take some time gathering enough suggestive - consistent test evidence (brain & spinal MRI's, LP, VEP etc), clinically abnormal neurological signs, symptoms (type, RR pattern etc) and to rule out every other possible medical condition that could also explain those results.

I'm not actually clear on if you have experienced Optic Neuritis (ON) or not, ON is most commonly 'unilateral' in MS, and you've experienced both unilateral and bilateral visual dysfunction within a short time of each other, and your visual test results don't seem to have found anything to be abnormal, which should open the door for an alternative possibility.

hmmmm you've mentioned having a persistent headache and that you have a cardiologist, if you have high blood pressure or heart condition of some kind, it's possible that what's happened is related to either. Some types of headaches eg migraines can cause both uni and bilateral temporary visual issues, and both migraines and heart related issues are associated with ischemic periventricular white matter changes and either would explain why there isn't anything specifically abnormal with the health of your eyes.        

The LP is another test that can't specifically point towards or against MS, from my understanding, your LP shows there is an increased amount of inflammation going on at the time of the LP but as far as i'm aware (someone please correct me if i'm wrong!) signs of inflammation can increase and decrease, with conditions like MS causing the Obands to be permanent. It's possible that there may be other test information within your LP results that you've not mentioned that 'might' be clues to what else could be going on.

Oligoclonal bands are associated with other medical conditions too eg Lyme Disease, Systemic lupus erythematosus, Neurosarcoidosis Subacute sclerosing panencephalitis, Subarachnoid hemorrhage, Syphilis, Primary central nervous system lymphoma, Sjögren's Syndrome, Guillain-Barre Syndrome, Meningeal carcinomatosis, Multiple Myeloma, Parry–Romberg syndrome and Neuromyelitis optica (Devic's disease)...

It's likely, for your friend to have been dxed in 2 weeks that there was additional evidence to what you have mentioned eg 1 or more lesion that highlighted with contrast, some lesions lighting up and other not, 2+ lesions in 2+ MS specific locations, clinically abnormal neurological signs etc etc.

I would suggest you take a deep breath (i know easier said than done) and try not to get too worried about any particular condition at this stage, you'll have a much better idea of how likely it could be MS after you've seen your friends neuro, (who i'm presuming is an MS specialising neurologist if your friend is dx with MS) in a couple of weeks. Please let us know how that goes!    

Hope that helps.........JJ

[happytexas]

JJ - more of my LP results came back. They tested for a lot of the conditions you mentioned....which all came back negative. As far as the optic neuritis, I have lost the ability to distinguish colors (they tested for that) and I experience pain any time I move my eyes. It's like having a pencil stuck in my eye. At this point, I would just like something that will ease the pain, especially the persistent headache.
Thanks for your help!

[HVAC]

Sorry the doctors will not get back to you. Most of us take years for a MS diagnosis. My first MRI showed MS, the doctor said he thought it was MS but needed more tests. It took me two years more before I was diagnosed even though I was textbook. Yours should not be that long. Neurologists naturally move slowly with MS. I had to wait 6 weeks to see the doctor after my Lumbar Puncture. Then another 3 weeks with lots of blood work until I was finally diagnosed. The headache is probably from the LP. LP headaches are common. It should get a little better every day.

Alex

[happytexas]

Thank you Alex. I had the headache before the LP. I have a friend who had the same test results and had a diagnosis in two weeks. I have an appointment with her neurologist in 2 weeks.  So, hopefully  we will  know something sooner rather than  later. I can't imagine waiting 2 years to get a diagnosis. When did you have your first symptoms?