What Cherie said. I'm not familiar with your story and why you stopped Copaxone. I'd love to hear about it if you don't mind sharing that is

Owie! I'm glad you've got something to help - maybe the chiro can help you get a little looser. Definitely need something to get you through your trip!

graceful stotter...

I hope you get the full script, since it works for you.

and I hope the cracker an' 'ssage helps!

and dagnabbit, I hope they figure out what the problem is, with an eye to making it cease and desist.

mine's never gotten so bad I had to go to the ER, just went to the chiro to get dislocated things reinstalled.



hope the chiro can pop yours back into place, and that's all it is, honey.

gentle time.

I'll give you the abbreviated version:

1. 2003: Dr. Flip Flop--I don't know if you have MS, you have an elevated IgG index and oligoclonal banding, you have a thoracic lesion, I don't know if you have MS

1a. 2003-2006: MRIs and all testing done at trauma hospital MRI center

2. 2003: Dr. MS Specialist, Thomas Jefferson, Philly: You have probable/possible MS but I won't give you dx because they'll only treat the dx and not other things

3. 2003-2005: Dr. Flip Flop: You might have MS, you have MS, I want you on meds, I don't want you on meds, I don't know if you have MS and never said you had MS, I want you on meds, I don't know if I'm comfortable with a dx or meds see my partner

4. 2005: Dr. Decisive: I see lesions on your 2005 MRI, you have a thoracic spine lesion, I'm dxing you with MS

5. 2005-2006: Dr. Decisive: two exacerbations, two IVSM rounds

6. 2007: Dr. Decisive, MS Specialist, gets recruited to Cleveland Clinic for MS education department

7. late 2007: I try to get new neurologist at Johns Hopkins

8. January 2008: Dr. Researcher: your 2005 and before MRIs and testing are crap, I see no lesions on those MRIs, your 2007 MRI is better--I see two lesions but they're probably artifactual and in your corpus callosum, you have transverse myelitis

8a. Dr. Researcher: repeat all tests except SSEPs

9. January 2008: Dr. Researcher turns out to be only consult and NOT treating neuro

10. try from January 2008 to end of July 2008 to get treating neuro at Hopkins--finally succeed

11. August 2008: Dr. Been Recruited by Facility in Texas: I see one lesion on your 2005 MRI (no mention of 2007 brain MRI), dx: probable/possible MS--clinically isolated syndrome and if see another lesion on brain MRI, dx w/MS. See doc to whom I'm referring you in 4 mos. for repeat MRI and visit.

12. August 2008: Dr. Neuro #6--I have appt with in December 2008. Who knows what HE will say about testing and or MRIs

So that's the story. As far as I'm concerned, I'm waiting to see what Dr. Neuro #6 says and I have MS. There have been so many back and forth dx, no dx or change dx things that I'll stick with the dx tentatively until I get the final(?) opinion from Dr. Neuro #6. He could come in and say, Yes, I agree with Dr. Decisive--there ARE two lesions and by the way, I see them on your 2007 and no, they're not artifact.

Cripes..... reasonable neuros can disagree, but that is ridiculous. And radiologists haven't seen anything on my MRIs.

Thanks, Cayo, me too. I just felt that when it got beyond "10 cm dilated and pushing time pain" that I needed to see someone!

Chiro said I was all out of whack (no derogatory comments please, I realize I'm not "normal" ). Tailbone was even out of place! He said from what I was describing to him (and some things he did), that it might be a bit of a disc problem. Wants me to lie down a lot this weekend, see him on Monday, and use ice/heat. Agreed massage was good idea.

Got an appt. with the spine doc right after my trip--first day back to work even. That's good. They'll be a good opinion to have. Will have to take MRIs to them.

And haven't heard anything from my regular doc. Will see what happens Monday.

Got through to Dr. Recruited by Facility in Texas's office and they were going to e-mail him and his nurse with problem. Said they'd get back to me. Nothing yet, so don't believe that I'll hear anything until Monday.

<sigh> And I only have MRIs from 2007 right now. Hopkins didn't return my 2003-2006 MRIs, just the one disc from 2007. Hopefully the MRI center at the trauma hospital can get me a disc in time for the spine doc visit.


I did tell the spine doc's office and chiro that I did not want to go to the UK and see the country through its ERs! NOT the way to visit. LOL

The woman on the phone at the spine doc's office laughed too because her mom has MS and she got sick with pneumonia on a trip to Hawaii. Spent the whole trip in the hospital. She told the woman that her dad had more fun than she did. I said, hey she needs to look on the bright side: she got to meet more people than he did and I'll bet he didn't get breakfast in bed and she did!

Awe yes . . . I remember now. Gonna have to bookmark this one, so I don't have to ask again.

You had that 'strange' supposed TM attack too, didn't you? Not "all-on", but nagging for many months if I remember correctly ...?

I guess it would normally be good news that our drug is working and we have no new lesions . . . but confusing when you are still sorta' kinda' in the dx process.

They say that we have the most opportunity for benefit from the drugs when we are still at the CIS stage, so why not continue on Copaxone anyway?

Have you been thoroughly work-up for Syringomyelia? That's what my sister (who they thought had MS as first) was finally dx with . . .

The other thing that comes to mind is Arachnoiditis: Chronic inflammation of the arachnoid surrounding the spinal cord and roots, often seen following spinal surgery or use of intrathecal contrast or medications.

Cherie

Yep, Dr. Researcher said that attack was TM. But Dr. Recruited by a Facility in Texas agreed with me and said not a typical TM presentation, something else going on there.

See, no lesions on 2003 xray--all docs agree with that. Then miraculously in 2005, I have repeat MRI and there are two lesions Dr. Decisive sees. That combined with 2003 episode and thoracic spine lesion led him to dx.

So I still have problems with other docs saying "hmm... MS or not?" Why? Well, no brain lesions 2003 but thoracic spine lesion, elevated IgG index and oligoclonal banding.
Two lesions brain MRI 2005, exacerbations 2005 and 2006. What's all this about time and space? Ya think that's met if you have first clinical episode in 2003 and one spine lesion then 2 years later 2 brain lesions and more clinical attacks?

That's why I'm sticking with the MS dx until Dr. Neuro #6 visit.


Dr. Researcher says that might be benefit, might not for Copaxone. My call. He doesn't see it necessary yet. Dr. Recruited by a Facility in Texas says sort of similar thing but it's still my choice. I say, hey, I'm comfortable with no drugs right now. Let's see what happens. If I have another lesion, then I'll go back on.

So I'm waiting.

Meantime, the stupid back thing is going on.

Brain has Syring. But I don't know much about it or if I've ever been worked up for that. Truly. There have been so many things that they've ruled out that I haven't a clue what's all been ruled out! Don't know anything about the Arach. No one's ever suggested spiders before. LOL

Syring is not something they normally test for, and there are not many doctors out there that know much about it. It is considered very rare, and most often dx with Chiari malformation. (My sis doesn't have that though ...)

I just thought of those two because of the "other" damage you have in your spine. My sister had spinal surgery, and several people I know with Arach got that because of invasive procedures or trauma to their spine.

Cherie

The only portion of my spine that's not been MRI'd to my knowledge is the lumbar spine. So far, no cyst's shown up on MRI in the T or C spine area. I don't always have pain--this is new.

The spine docs should have a better understanding of what could be going on if it relates to the spine. Two things, however, that I could maybe ask about. So thanks for bringing them up.

Jeez ya Hoofed Creature! Just reading the list of docs and opinions got me riled up heah! No wonder they call it practicing medicine!

Whatever the outcome of all this is, I hope for your peace of mind and body, that it calms down for the trip!

Get that spine doc to give you some meds to get you through even if you aren't on the schedule 'til after the trip! Drugs are GOOD, especially when traveling, even better when you actually have a prescription for them...