What is your diagnosis?

[doublevision1]

There seem to be a lot of new members here.  I'm curious about how many are diagnosed and if so, with what.

If you have a confirmed diagnosis of MS, please indicate which kind, or, select one of the other responses that best describes your current status / other diagnosis.

[AmishErin]

Diagnosed with MS in 2003 now doing tests for rheumatoid arthritis Good luck all still in limbo

[Spuk]

I hear that!  Thanks for reminding me I need to recent copies of all my visits!  My memory suffers a lot lately so maybe I do know but I just don't remember!!.

Personally, I don't think they know what MS is for sure...they gave it a name and said -if she relapses slowly...we're good,  if fast-let's call it progressive.
Then again, they tell me I may have had it for over 8 years when he dx it...so who knows?

Again, I would rather NOT have them tell me it's progressive...I know my body and I know it is "progressively getting worse".  You don't need an MD to tell me that stuff....!! LOL.

Thanks for the comments,write me anytime and  best wishes that you are ok no matter what the dx!  (*-*)

[myms33]

well if you ask me , I got a complicated 3 way diagnosis. One says RRMS with progressive attacks, one says nothing just MS with partial complex seizures, the last one just doesn't label just likes to play with all your meds and call it plain jane MS......I would like to call them crazy and thank them for not giving me a real accurate answer, I always make the joke in order to know every little detail you would have to get your medical records.

[Spuk]

Sorry I do not know the differences yet, when i was first dx March 08 I was told  Relapsing MS.  I also have it in the Cns, Brain, Blood.
This year it has turned to Progressive MS.   Is that SPMS?

I have so much to learn, guess i should get online more huh?

[Sarahsmom46]

I started out with a diagnosis of acute partial Transverse Myelitis.  Later it was decided that it was probably MS or Clinical Isolated Syndrome.  Then the MS neuro committed to diagnosis of RRMS on May 18th 2009.  

[goofysmom1]

I am undiagnosed.  I have had 2 neurologists "suspect" MS - but Neuro #1 said possibly "sensory seizure" after "normal" MRI (the radiologist noted a UBO in corpus callosum of unknown significance) and abnormal ENG/VNG test.   Neuro #2 said "something going on, but until tests show something, nothing to do" and "I am too aware of my symptoms" and symptoms "may be related to Vitamin D deficiency".  

Well, the vitamin D deficiency has been treated (now at 61) and still having same problems.  

New Internist thinks I need to be evaluated & monitored by an MS neuro to see how things change/develop.  Have an appointment with MS Neuro on July 13th.  Will be interesting to hear what she says.

Chrisy

[steph74]

I have a confirmed dx of Celiac Disease, but we're pretty sure that's not what's causing my sx.  In the past I've been dx with complicated migraines, but that also seems unlikely...  Have had several drs at this point say it's extremely unlikely to be anything other than MS, but still not dx...

[sandie490]

Okay, so can you have all of those diseases, along with the diagnosis of ms?

[shelleyannjohnson]

I am a limbolander stuck between the diagnosis of MS and ADEM.

I go to see a new neuro (my 4th in just alittle over 1 year), to get her opinion. Actually, NO I don't want an opinion, or even a diagnosis. I am lowering my expectations, to just getting a neuro who will do a neurological exam!

First neuro I left in Europe when I came back to the States.

Second neuro diagnosed me with MS...but I had a terrible time understanding a word he said, so I decided to go to an MS specialist since I had the diagnosis.

Third neuro took away my diagnosis of MS, and said I had ADEM. I have had her for 2 exams now, one in December and one in April. During the April exam, she didn't even check my reflexes or even doing a neurological exam.

Now...on to my fourth neuro, with lowered expectation. I meet with her on Wednesday.

Hopefully my expectations will be met!

[HVAC]

RRMS

[PastorDan]

Thanks, dv1; I knew there was a better answer to that question.

[doublevision1]

Devic's disease, transverse myelitis, ADEM are also demyelinating diseases of the CNS.  

[PastorDan]

Thanks.  I think the Lord wanted me to learn patience again, among other things.

I understand what you're saying about the terminology.  It's like saying that I travel in a large motorized device with a blue bowtie emblem on it.  Duh.

[sandie490]

Hey! I'm back again, really soon huh?  I just googled this demylinating disease of the CNS, and it's definition said that,  this is ms.  Da. Ms Is a demyelinating disease. Why do some of these Dr's find it necessary  to beat around the bush. If it's ms which it sounds like it is, just say ms!     Oh, my lord!  You know the expression, this is gonna hurt me more than you?  
Well, that's what it's like going to these dr's who aren't up on there diagnosis abilities. They really don't understand the damage they incur, physically, mentally, and emotionally, when they don't listen to their patient symptoms.  I really hope everything works out for ya, and you do get a definite diag.  

[sandie490]

Okay. so what is the difference between what they are saying and ms. I thought ms is a demeyelating desease?  What's the difference between this CNS, and ms.  I have never heard of  just a "Demyelating disease of CNS" there has to be a specific disease that causes the demyelation, right.  

[PastorDan]

I've been given no firm diagnosis, only theories, and I don't believe that they're final at  all, because I am still experiencing the main symptoms that I've been experiencing since last year, despite a host of treatments based on those theories.  Correct?  Let's just say I remain unconvinced.

[sandie490]

I'm in limboland, I really haven't discussed with a neuro yet about a positive diagnosis of ms. It was referred to after my brain mri but never went any further, because the neuro I was using at the time doesn't read films, even though the report said possible ms.  Anyway when I went to see him he just said, no you don't have it.
Since then I have several more symptoms,that  seem to point to ms.After the neuro told me that, didn't think about it again.
Went to a new neuro to try to find out whats wrong, he's not sure either.
4 months ago, my sister was having trouble with her eye, optic neuritis,
went to the eye doctor.  He told her I think ms, better see a neuro. Anyway after some mris and tests, very thorough I might add, definite diagnosis.
She called me up, and said, Sandie, I am in the office looking over the booklets, and this is classic, you, with all of your symptoms.  Seriously, I would say I have about 90% of the symptoms, including the Lhirmettes sign, that my neuro put in his report, after telling me,  this is usually a symptom that's associated with ms.  Go figure! Another Genious Neuro!
So, please tell me guys, what are these other illnesses, or diseases, that you were diagnosed with.  What am I in for, when I see my next neuro?  Are these diagnosis's that you have been given, final and correct?   Sandie

[PastorDan]

Depends on who you ask.  I have a letter from a CNP describing me as an RRMS patient.  Her notes also indicate that my symptoms are indicative of that same annoyingly nonspecific demyelinating disease of the CNS that Uf2 describes above.  Meanwhile, the M.D.s are chasing migraine, because I had one earlier in the year, and because they're ...  No, I'll get off this horse here and go back to sermonizing for tomorrow.

[hbananas]

Other:  Transverse Myelitis

[Ufrustrated2]

Other: "demyelinating disease of the CNS"