I have MS!
 

ok, after many pokes, prods, and tests by several special MDs. it has been determined that I DO NOT have primary sjogrens. The RA MD was more than premature in her zeal to provide me with a sjogrens dx. The MS MD said i have PRIMARY MS, RRMS. NOT sjogrens, and he proceeded to take a bite out of the other md for trying to drag me off my path. He said they work very hard to provide a dx, and frequently keep people ON limbo isle till they can prove or disprove MS, and he didnt hand me that dx lightly.

So, IF and thats a big IF I have secondary sjogrens, it doesnt matter if I have that lip biopsy or not, it wont change my treatment. it wont matter. I can still be treated for my poor old dry eyes without interfering with my dx.

My MRI shows 2 new non enhanced lesions and 2 new enhanced lesions. I was a run away train before and was collecting lesions like a kid collects baseball cards. So, this is a slow down for me. I am to stay on copaxone for another 6 months and we will re eval from there. it appears as though the C is starting to do its job. took forever with me.

Thanks for all the support.

So glad to hear you have a dx. Maybe not the best one, but no doubt you feel a little relieved knowing exactly what you are dealing with.

It gives those of us in "limbo land" so encouragement (if that is what you want to call it). I go see my neurologist (he is an MS specialist) in August and I am hoping to get this mess cleared up.

(((((((Hugs to you for all that you have gone through.))))))

Missy

Support is yours.

Hey, were you near the tornado??

I am not sure if I should say congrats or not. So, I'll just say I am glad you have some answers now and wont be driven off the path. :hug:

Glad to hear that you've got some answers and your health is stabilizing!

Not glad to hear that it's MS, but what can ya do? ;)

:hug:

Finally some solid answers! And grats on the Copaxone working! :)

Finally, a Doc with some gutts...Congrats on the Copaxone working.....that is good news.:)

:hug:

Glad you're getting definitive answers. That's reason enough to feel good! :)

Congratulations... right?

Has anyone taught her the secret handshake yet? ;)

Congrats on the Dx! It is good to have someone tell you it is all in your head...so to speak..you know what I mean. MS..that is...a Dx...I mean...:D

congrats on having an answer, Dj, kind of an oxy moron statement:Bang-Head: i am still not sure how to approach this congradulating someone for having MS but at least the doubts and not knowing are gone, sometimes that limbo and or being miss DXed can be worse, suspended animation,

Glad you got an answer and the C seems to be working, oh and if DM shows you the secret handshake :lookaround: make sure she cleans the pixie stuff off her hand:yikes:

Glad to hear you have a dx, congratulations it's MS? :rolleyes: Or not.

Knowledge is power. So glad the Copax is working for you. Please continue your path to stabilization.

:hug:'s

Glad to hear it's not primary sjogerns and you were on the right track all along. I've been praying for you. I hope you get some symptom relief for all your "dryness":highfive:

This is a hard one.....congratulations or commisserations....what does one say? :confused:

I'm sure you're glad to have a diagnosis even though it's probably not the best one you could have hoped for.

One good thing though.....you already have the bestest support group ever! :D

I'm happy to hear you finally have a DX, and I am very happy to hear you only have 2 new enhanced lesions. That is great - lets hope for no new ones with copaxone on the next one. It does look to be wking.

I am so very sad that you had to get stuck with the MS DX. It is not an easy one to deal with, but you seem very strong and I think will be able to deal.

You know there is tons of support for you here, and in many other places. Just call out and we will all be there for you.

I am glad that you finally some answers. I know I would have been really upset if I was told that I had been injecting copaxone for nothing. I hope that it continue to work for you -- even better than it is right now. I guess I am a bit surprised that the doctor is satisfied with copaxone given you have 4 new lesions.

yes, I was near the tornado, but we are high and dry at my house. LOTS of devestating things surrounding us. People died in their homes, and some had to be rescued from their collapsed houses! :eek: The roads are still littered with trees and debris, and its awful around here! we have had rain, rain and more rain, day after day. wild stuff.

If any of you were following my story, I have been dx with MS since 06. I went to an MS center, and found amazing MDs. for the last few months my eyes have become EXTREMELY dry! and an eye surgeon who gave me eye plugs suggested sjogrens. Did the blood work, and it was negative. Saw a rheumy MD and she was dancing in the streets claiming that I had been mis diagnosed and MS was not what was wrong with me, and that I have been shooting all these drugs for years and its not gonna work, or help me, and my MS center should have never dx with me MS, and she wanted to put me immediatly IN the hospital for 5 days of methotrexate and IVSM and then put me on oral methotrexate and it was a whirlwind of confusion and frustration. I was ANGRY to thinK I was mis diagnosed by a major medical center, and had been mislead!

The MS center did a FULL review of ALL of my past medical history back 15 years, and then the big dog himself called me to reassure me that this over zealous MD was OUT OF LINE! That she had NO clinical evidence, other than my dry eyes, and even in the face of substancial medical evidence she was OUT OF LINE to tell me i had been mis diagnosed with MS and actually had SJS BEFORE fiinishing her investigation, and pulling up old records, reveiwing MRIs and including the team that worked so hard to dx me in the first place. He told me that others who have come to them with a dx of MS have had it removed by them, but they are VERY VERY VERY careful to be thourough in the diagnostic critera used to dx a patient in the first place.

So while my post says I have MS, the story is that I have had it for a couple of years now, and its a long drawn out story of another sub specialty trying to drag me off a path that I was placed on with great care, and detailed testing before they dropped me off here.

So, thanks to all for the great support and cheerleading. you really helped me get over that hump. :grouphug:

I don't know why there isn't more cooperation among specialists in different fields, instead of competition. I seem to hear this with Lyme, Fribro, and MS especially. I have a friend who is a basket case because of the tug-of-war among three of her docs.

Will you be "following up" with the gung ho doc?

Glad to hear the wild weather bypassed you. I have friends in Epsom, nearly fell out of my chair when I heard that town named in conjunction with a tornado!

actually I will be following up with her because I think I have developed RA in my ankle on that drop foot, and if I have secondary sjs, then i will want someone in my corner. She was VERY nice, very sweet, and well...she is VERY young! she is new at this being on her own stuff. Actually she is part of the hosptials program, and I am sure that my MS center will get the hospital involved. I am sure she is going to take a beating over this.

Was she over zealous...yep! Was she out of line? yep! I think it was just a case of being the new girl in the new circle or the new city and finding a patient who has so many things wrong with her, that you so badly want to fix, and her specialty could explain so many things....you get the idea.

I will give her a chance to explain herself next visit. Maybe she will be a jerk, and maybe she wont wont want to forgive herself, or maybe she will be insisant that she is right....I will give her the chance to explain herself. she hasnt called me yet, so I assume I still have a follow up appointment.

Wow Dej, I wasn't aware that a tornado devastated your region. I'm glad you made out ok, but I can imagine that is a tough time for you, the family and everyone around. :grouphug:

Glad you got answers...

AMN...I didn't teach her the handshake but I can show her the happy dance...lol

The one I used to do at work...

Well I WAS confused as I have been following your story on Sjogren's having gone through it myself. But I had dry MOUTH very badly too.

Ok, you already WERE DX with MS then this rhuemy came along, for the dry eyes etc and on and on.

BUT I am glad your MS docs are so certain, mine were not. I HAD an MS DX then not, then maybe, then not. So when I saw my Rheumy she told me I had way too many symptoms to not have some DX.

The next Rheumy said no, without the labs to substantiate a DX of Sjogren's he took that DX away. BUT he contributed to another DX that I have been fighting with the MS docs, Autonomic dysfunction that is another story...

It gets so dang confusing. Told you that Methotrexate had side effects but DID get rid of my spasticity entirely !!! NO one told me that.

Good luck Girl!! Keep us posted. How are your eyes now??

Jan

My poor old eyes!

I had the punctal plugs put in the bottom. they did help some, but not enough. I am gonna go have the upper plugs done.

yes! I was very confused. I had a firm Dx of MS, then this RA sez, nope, its SJS! I was concerned, confused, and more than a bit nervous. I am Negative for blood work for it, and lupus, and I am negative for lots of other things that SJS has. I drool at night (dont tell anyone) so I must have moisture in my mouth...yes? I have very dry skin, and other dry things, but in the face of all of those negative things, there is no need to pull me off a path with firm diagnostic critera being met through MRI, blood work, and so on to put me on a path with lots of non markers.

so, my eyes are VERY dry, and I hope the quad plugs will do the trick.

Oh my dear your poor eyes!! Have you asked or tried Restasis?? It CREATES tears eventually.

Now I hardly put eye drops in, or maybe only at night where gravity works against tears. All i know is that I Have improved my poor eyes and mouth that I do not take the pill for saliva anymore either. Maybe its the good nutrition program I am on... who knows?

Sjogren's still COULD be a secondary DX...what do you think? What else causes eyes to dry out as much as yours?? So you will see this Rheumy again? I mean some have many MS symptoms yet have no lesions yet... ya never know...

Let me know k?

Best to you..

Jan

I won't tell about your drooling if you don't tell about my drooling Dej!

Dejibo, I have been following your story closely but I can't recall, did you ever have the lip biopsy so that this can be laid to rest? Like you said your MS Sx came long before any Sjogerns, but clinical biopsy proof should certainly put an end to any medical ego tug-of-war. Again, glad to hear that you haven't been poking with C for 2 years for nothing.:eek:

I have NOT had the lip biopsy done, and have chosen to forego it. since it wont matter in my Dx one way or the other, why put myself through all that?

I guess I am considered secondary SJS, so my poor dry eyes! :eek:

Almost every drop I have tried has made my eyes puffy and swollen and STILL DRY. so, we are trying to avoid any drops right now, and let them heal a bit.

I did have the MS stuff loooong before any dry eyes.

I will stay in the MS camp and be thankful that its not something worse. trust me, there are worse things.

i'm sorry to hear of all your travails but glad that your dx has firmed up and you know where you stand.

i'll say a prayer that your eyes improve. that is very painful to have such dry eyes and can lead to a corneal abrasion, also painful. i speak from experience. so hope your tx helps.

glad to see your update. please take care.

Sorry that you have MS, but at least you got some clarity...
Now if only your could get something that would help your eyes.

Maybe watch Titanic for a day? I cry every time I hear that awful dialog...