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Hi everyone
I'm new here and currently undergoing tests and being evaluated for early MS. Any advice would help. My first odd thing was double vision in left eye, eye dr (whom did nothing really except minimize) said he saw inflammation and eyes were bone dry. Then I had 2 falls in work (legs felt like they gave out). Finally got to nuerologist, they did MRI. Also, I have a autoimmune disease called undifferentiated connective tissue disease.

Showed 6mm periventricular lesion & prominent virchow robin space. Nuero said looks early MS and did a ENG on my eye and my left eye is not following correctly and said looks to be from central nervous issues. She then said next step is lumbar puncutre. Showed elevated IGg no O bands...

Back for the follow up and she backtracked on everything!!! Said she looked at my MRI and not indicating MS?????? Said all could be from autoimmune disease, talk to Rheumatologist... said I don't understand ? She said to track symptoms on calendar for several months come back. I also showed her pictures of my eyes which showed that they were both severely red, dry and inflammed, said this is uveitis and again talk to rheumatologist (i just wake up to them being like this overnight!!!). Stupified and upset i left because I felt like once again I am in diagnosis limbo and no answers and not enough help. Meanwhile I'm getting worse.

The other odd thing is I never brought her my MRI and after I left the office I thought when did she look at my MRI as I never brought her the CD.

I made an appt with another neuro and have a follow up with a neuro opthamologist. It seems to me that this is separate from my connective tissue disease. Now I am getting numbness in my left arm and leg and just feel week and exhausted all the time. Seems to have gotten worse with this awful weather.

Anyway, sorry for how long but has anyone experience any of this, does this sound indicated of MS? I can't find any instances of falls, the eye moving incorrectly and the spot the lesion is located to correlate with lupus or sjogren's or connective tissue disease.

Thanks so much

Welcome, Little flower, nice to meet you. Your Neuro leaves a lot to be desired in the bed manner department. Gettin a new Neuro is a step in the right direction.

Be patient though, Neuros are antsy about jumping the gun on a DX for MS, if all the criteria ducks are not in a row. Takes time for a deffinate DX, although, there is no reason why your Neuro or regular Doc can't treat your symptoms.

Happy to have you here with us..

Welcome!

First, breathe! just breathe! its a process, and one that can really wear you down. You are going to run into MDs that make you feel like a whiner, and MDs who make you feel like they really are going to try to figure it out, only to give up in six months. I went thru MDs like kleenex for a while.

There is a disease called Sjoghrens. it can mimic MS (including the lesions) it causes dry eye and dry mouth and dry organs. I have probably butchered the spelling, but a Rhume is the exact person you would be sent to for examination for that disease. I Have this AND MS. I have plugs in my tear ducts that prevent my tears from escaping my eyes, and that allows moisture to stay. I also use drops, and sometimes ointments.

There are more than 100 diseases that can mimic MS including the lesions, and mimic the symptoms like dragging a leg, damage to the optic nerve from being so dry, vitamin def, lupus, lyme...the list goes on. Sjoghrens is another rare disorder, but there are treatments for it. Overwhelming fatique, and other things can ride in the car with it.

Hang in there. Getting a firm MS diagnosis, or a firm turn away from our club house can take months, years, and in some cases decades. If you feel your MD is being dismissive, get a new one! MAke sure you get an appointment to an MS clinic (most need a referral) and allow the best of the best to sort it out. A rhum is a great idea! she can help "rule out" lyme, lupus, and sjoghrens and that will take 3 out of 100 off your Mds list of possible suspects.

Its tough to be sick and to not feel believed, but it sounds like your MD is sending you in the right direction.

welcome to NT, glad you found us.
it does sound reasonable that your neuro wouldn't think MS. but a 2nd opinion is a good idea.

some drs can hook into radiology images on their office computers so the dr may not have had to have the CD in her hands.

start to get copies of your dr dictations and reports. 1 to read for yourself and 2 to keep a medical file on yourself. if and when you see other drs they may want to review these things.

i also think seeing a rheumatologist is a good idea. but if the dr dismisses you i'd find another. you must have a dr that is willing to listen and validate. what does your pcp think?

please keep us posted and keep in touch.

When I was diagnosed I also saw a rheumatologist. I went through 3 neurologists before I found one that I liked (4th doc.). The first neurologist was not an MS specialist. I had high IgG but no oligoclonal bands, lesions, and problems with vision in one eye. It turns out that I did have MS not something else (there were lots of confusing other symptoms they couldn't figure out at first, principally fever and other abnormal tests). It's always good to get multiple opinions and sometimes MS can be tricky to diagnose and there are multiple autoimmune disorders. For me it helped to see both a rheumatologist and a neurologist. Like everyone on here has said so far, you have to be assertive about your health. If you don't think you are being listened to, then dump the doctor and try another. I had some really bad neurologists in the beginning--they aren't the warmest bunch in general. Good luck!!

Hi
Thanks for your repoly. My rheumatologist thinks I have early sjogren's but from what I've researched this typically does not cause lesions in the periventricular space nor does lupus. I can't account for the falls from this either. Which is why I'm suspecting MS on top of the sjogren's.

May I ask how were you finally diagnosed with sjogren's syndrome? How did the MS come about and which one came first for you and what were your symptoms?

I appreciate it. I just want answers and to feel better and I can't see how if it were just the autoimmune all these meds I'm on : plaquenil, immuran, and prednison would not be controlling them. Another reason I feel there is another disease process going on.

Thanks!!!

you sound so knowledgeable. that's a good thing. a major thing is to keep being your own advocate.

a 2nd neuro opinion is a good idea. perhaps an MS specialist?
con't to keep that sx journal. your drs may find it helpful.

i got dx'd after an abnormal neuro exam, lesions on mri and O-bands (2) on my LP.

but, i would think that sx's are important too.

please let us know how you're doing.