Checking in...Hold the Mayo

[Momzilla]

Hey, Peeps~

My worst fear has been realized. I've become a lurker. I keep checking up on everyone, taking a peek every now and then, but never put my two cents in.  This is just fine for those who haven't posted before and are just checking the waters, but not for someone who's been hanging around here as long as I have been. Shame on me! I will try to engage in all areas of my life more, including this forum.

A quickie update -- As you know, I was in the hospital in the first part of May, and was finally treated with enough steroids to actually make a difference and give me my strength back.  1,000 mg per day for 3 days.  Yea!  Since the episode in May was just 3 months after my last episode, my neuro, Dr. L. is very keen suddenly to get a diagnosis for me, but is still very reluctanct to give me one on his own.  He's shipping me off to the Mayo Clinic in Rochester.

I know, I know...sounds like another dead end.  In fact, at first, Mayo said Thanks, but no thanks.  They respectfully declined my request to be seen. They felt my testing was thorough (and how!) and they had nothing more to offer.  Dr. L. wrote them again, saying he'd really like them to give me a once-over, and he'd follow their recommendations.  So, they said OK, we'll take a look-see, if you insist.

My husband asked Dr. L. if he thinks this could be MS, like so many docs have mentioned when examining me.  He said, it could be. He said We do know that 5% of MS patients have normal MRIs and LPs. (WHAT!?!?! He knew that?!?! I was so shocked!) He said that he really wants the people at Mayo to look at me and if they don't come up with anything, and they might not, it won't mean it's a dead end.  He'll know what to do then. (Will he diagnose me finally?)

I truly feel that Dr. L. will diagnose me with MS if Mayo does the final 'rule out."  As if I haven't had everything ruled out up until now.  Amazing.  But, my case has been a bit muddied, I guess.  All the migraine stuff. The normal MRIs, LPs.  

My husband is convinced I have MS now.  I was lying on the couch the other evening and my legs ached badly.  He was sitting by me, and I asked him if he would rub them.  He rubbed them and said he wanted me to feel like a regular person and not just like an MS patient. I felt so good.

I also have kept an appointment with another neuro this month, Dr. M. (going through the alphabet), since Mayo will not get an appointment for me until the fall.  Dr. L. is trying to expidite my visit to Mayo, although there are no guarantees this will happen.  I am aware of everyone's expectations of Mayo, and I understand.  For me, I don't even think it matters if they come up with nothing.  I think my doc will diagnose me anyway.  He is so ready to treat me for something, and I really think he thinks it's MS.  I heard him tell a student he's ruled out everything else. And telling my husband about the 5% of patients with normal Mris and LPs.... I think I'm almost there.

And if not...THere's Dr. M.

Take care, Peeps, and feel well,

Talk to you all soon!

Zilla*

[Super_sally888]

Hi Hon,

You definitely deserve some answers. Hope they are coming.  So nice to see you check in.  I've been thinking about you.  I too am lurking.

Sally

[Heather3418]

I have missed you so much, girlfriend.  I am happy to hear your news of a possible diagnosis becoming a reality.  It certainly can't come too soon.  I also think your current doctor WILL diagnose MS.  But happy for you, that you are going to be checked out at Mayo.

I know it's summer time and everybody is busy with outdoor activites, children, cook-outs and just plain enjoying the warmer weather, so the posting on the Forum seems to have dropped off among the "old-timers."  I've missed everyone so much.  We not only have great newcomers to the site and add in the "old-timers," and this Forum rocks.  So don't be a stranger....  The newcomers with questions need our help. Since we have all been through so much and have much to share with them we need to stop lurking and add our two cents...You hear "Lurkers?"

I send you much love and many gentle hugs,
Heather

[Fluffysmom]

Hi there, lovely lurker!  It's good to see you, and read your update.  I hope your Dr. L. can get the diagnosis nailed down.  Oh, I'm really glad the steroids helped, and that your husband is believing that you could indeed have MS.

Have you read my saga as you've lurked?  After wasting many months with my MS specialist, I finally had a serious talk with her, refused to accept the really poorly done 3T MRI reports, and decided to find a new neuro.

My PCP had a neuro-radiologist read my 3T MRIs, and she called me excited and convinced that I had atypical MS and offered to send me to the Mayo Clinic in Rochester.  I'm trying to be seen by Quix's neuro; took my info and copy of MRIs over to his office and hope to have an appt. soon.  If that falls through, then I'll be looking at flying across the country, I guess!  I'll cross that bridge when I come to it.

Sending you hugs and prayers and happy thoughts...

Kathy

[mokibear]

Don't worry about the lurking, it seems a lot of us have doing that lately.

I'm glad that maybe things are finally looking towards a dx for you. I'm sending all the positive energy vibes that I can muster that finally you get your answers.

Hang in there and know that we are all rooting for you.

Hugs
Moki

[sllowe]

Hi Zilla,

This path sounds hopeful, Z.  I'm glad you had the energy to let us know.  Don't feel guilty for lurking and not posting.  Though I miss you very much and your posts -  don't want you adding more onto your shoulders.

I will continue to pray the answers come,
Love,
shell

[Amyloo]

Haleluiah!  I'll be praying for the right outcome for you.  Love to you.

[Lulu54]

Hey Zilla and all you other looky-loo's .... its good to see you come out of the shadows and back on here even though it might not be for long.  We need you old-timers more than ever around here helping out.  They are way too many people out there stuck in limbo looking for answers.

Besides, we do like hearing about things other than MS and doctor visits.  So please keep us up to date on whats happening with all of you.

as always,
Laura

PS - I hope Mayo works out one way or the other for you.At least you know what to expect.

[Wobbly]

Hi there, I too have been bad with just being a lurker, I'm on almost everyday but find it difficult to add any comments as I'm just waiting and waiting for results and answers, like everyone I guess.  No excuse I know. :((

I hope you get some answers soon too, there are still some of us from years ago waiting for answers.  And alot of new friends that come on and I feel bad that I don't get online more often.  

take care
wobbly
undx

[essdipity]

Hey there, friend! We have a lot to catch up on, so will call soon, promise.

I guess you do have to jump through this final hoop to keep Dr. L happy. Like you, I don't have a lot of hope of them actually saying something conclusive, considering their dismal record, but ya never know. I'd been hopeing you'd go to NYU, since at least there's NY there, and 'I heart NY.' Have never heard anything charming about Rochester, Mn.

The best news in your post is that your husb. is really taking this seriously and has dropped the wishful thinking mode. It helps so much to have support rather than skepticism.

Well, please communicate more with all of us.

Love,
*

[Sunnytoday]

Hi there, from one "lurker" to another... this can be disheartening, this whole process, but you are in a very wonderful place with a neuro who seems to care. Hang in there! I'm amazed, in awe, and very thankful you migt have a doctor who rules everything out and then say "yes, it's MS" even with tests that don't add up.... my dr. ruled everything out, and then said.... I don't know what you have. Learn to live with it. Good-bye. So, I think you are going through a very good process, and I was really glad to see this update!
((((hugs)))
~Sunnytoday~

[doni54]

Hi Zil!!

I am also a lurker, good to know I'm not the only oldie here who is still lurking...haha

All your news sounds really great.  I hope you can get in to Mayo before fall, though.  I will pray that your neuro will give you that dx really soon and that you can get started on treatment.

It does give me lots of hope that someday maybe even little old me will get a dx!  Same goes for everyone else here who has waited so long, with no answers.

Take care of yourself and know you are always in my thoughts and prayers.

Love & Hugs,
doni  

[Sarahsmom46]

Hey, Mo, it is so good to see your post and the update.  This is very encouraging.  

It does sound like he's almost seen enough in your case to get this show on the road.  I saw a specialist neurologist on demylinating diseases while at the NIH this past week and told me something interesting.  He said that diagnosing atypical MS cases is as frustrating for the doctors as it is for the patients.  I can usderstand that, but I asked him why do doctors who feel in their gut that the patient does have MS regardless of the normal results and he said that perhaps they feel they haven't had enough experience with MS to be confident in that diagnosis and they have to be able to sleep at night hoping they made the right decision.  

It takes a courageous doctor who is trying his/her best to do what is right for the patient to stick their neck out and say that although you are not the typical case of MS that he/she is confident from his/her experience in what direction your condition is going.  

We drew a graph of my relapses over that past year and even included something that happened before that and noticed that after each one of my relapses and remissions, I didn't get back to 100% where I was before, I got close, but not totally 100% recover.  He drew a line through the peaks and valley's and said, "see the downward progression"?  That was enough for me to visualize and feel confident in his confidence in diagnosing me and like you I am no slam-dunk 100% in the McDonald Criteria box case either.  With all the tests they are doing for MS workup, it is sad to see too many doctors still using the McDonald Criteria to the letter and forgetting about their clinical judgement when there are fuzzy areas.

I do hope your doctor keep you on this path to diagnosis and that it won't be long before you start getting the DMD.  Have you thought of which one you would start with?  

Julie