In a state of confusion

[risnerrose]

Hello all . . . long time, no see!

I've been avoiding all things "MS", since my July appointment, including the forum.  I felt like if I pretended there was nothing wrong with me, perhaps it would be so!  I have officially returned to the state of confusion.  My July MRI showed no lesion progression; therefore, my neuro has basically dismissed the MS diagnosis.  Should I just play along?  Is MS unlikely if the lesions are remaining "stable"?  Am I expected to simply accept the constant tingling and numbness?

Another concern . . . I now have a Baker's cyst.  Does this indicate something other than MS, or something in addition to MS?

Sorry if this is scattered . . . but so am I  :-o

Sherry  

[Wobbly]

Hi Sherry ...welcome back.... how long was it between your MRIs...months...? years...

have you gone through all the blood test...I'm not sure about the Baker's cyst...that sounds like inflammation...but inflammation is with MS as well, so I'm not much help with that question..duh...

I also have cyst's on the inside of my elbows...weird spot...my Dr says they are cysts...

I just had another (3)  MRI in July...the last one was 16 months earlier...this one showed changes...the second one...was 4 months apart..with no changes...

No I'm sounding confused...but with only 4 months...I had no changes...but with 16 months...I had changes..so??

sorry I'm scattered too...
andie

[Quixotic1]

I have had no change in my brain MRI for almost three years.  Now the last of those years I was on Avonex.  But, no one has suggested that it isn't MS.  I have NEVER read anything that states the MRI in MS MUST change within so many months or years.  It usually shows some change, but there is nothing to say it has to.

Were you on any medication (DMD) between your diagnosis and now?  And what kind of interval are we talking about?

My "gut" feeling, which has really been quite accurate this last year, is that a short period (less than two years) of no change is meaningless.  It just means that as far as inflammatory lesions goes, your MS has been quiet.  I even suspect that a period of much longer still does not change the diagnosis.

And if you have been on a DMD, that is EXACTLY what they are intended to do - delay the appearance of new lesions.

Can you fill us in on the time course?

Quix

[risnerrose]

I am not on a DMD.  I had an MRI in the summer of 2006 (which was incorrectly reported as clear).  An MRI in the summer of 2007 showed lesions, which were found to also have been evident on the first MRI.  This summer's MRI showed the same, unchanged lesions.  I did have an elevated IgG index in 2007, but I opted not to repeat the LP this summer (since my neuro was not going to prescribe meds even with the LP results).  Since the lesions have shown no progression, he is backing away from MS.  I am not to follow up until next summer.  Many of my symptoms have been transient in nature, and although some symptoms are almost constant, the doc seems to only focus on the transient "atypical" aspects of my condition.  I fear I'm losing faith in my doctor and in getting answers.

The Baker's cyst is making me wonder about Lyme or Lupus.  I've been tested multiple times, with negative results.  At what point can I feel assured that these diseases have been ruled out?

[Quixotic1]

If you have had three negative western blots for Lyme disease, then I would feel comfortable (if it were me) feeling that Lyme has been ruled out.

Lupus would be extraordinarily unlikely in the presence of a negative ANA and a normal Sed Rate (ESR).

Two other diseases that have elevated IgG Index are Lyme Disease, Sjogren's Syndrome, and NeuroSarcoid.  We discussed Lyme.  Do you have significant problems with dry eyes or dry mouth?  If so, then there are antibodies that can be looked for for that.  SS-A, SS-Ro, SS-B, SS-La.  If the diagnosis can't be made, but the suspicion is high, the diagnosis is confirmed by a lip or salivary gland biopsy.  To rule out sarcoidosis the first step is a thorugh history and physical and a chest Xray.

Since you, youself are losing confidence in your doctor, it is definitely time for another opinion.  I will continue to search for some guidelines that state whether MS lesions are ever "stable."  Another good thing to do, is to take the actual MRI images to another neuroradiologist and request a very careful review to see if there has been changes or not.  Does your neuro look at the films himself or does he rely on the radiologist?

Quix

[risnerrose]

Not having my records in front of me, I can not say for certain . . . but I am almost certain I've had negative results for the above mentioned tests on at least two occasions.  I am having no problems with dry eyes or mouth.  Is the Baker's cyst unrelated to any of the possible conditions?  (It seems like "just one more thing".)

By the way, are transcient symptoms insignificant?  If a symptom occurs for several minutes and reoccurs over several days or weeks, is it still considered transcient?

And . . . I'm actually seeing an MS specialist (my second neuro), and he does read the films.  My first neuro did not . . . and that is why he is no longer my neuro . . . one of many reasons.  

[Quixotic1]

Transient symptoms that are suggestive of MS are ones that recur in the same spot and may appear a various times during a day and on successive days.  They do NOT need to be continually present  to count.  Does once a day count???  I think that's pushing it, but the more days that it recurs the more it would count.

It is a gray area, but it is almost easier to talk about the kinds of symptoms that are NOT suggestive of M

Something that occurs, lasts less than a day and doesn't come back.

Pareasthesias that constantly move around during a day.

Paresthesias that are difficult for the patient to describe in terms of where they occur.  (eg.  "It feels numb somewhere on my shin.")  In MS they can tell you exactly where the weird feeling is.

Baker's cysts are not related to MS, but I have heard something about them being more common in Lyme.  I do NOT know if this is true.

Does this help at all?

Quix

[risnerrose]

This helps tremendously!  The neuro was the one that described my symptoms as transcient, but I never quite agreed.  I have episodes of right side weakness (sometimes resulting in complete inability to use leg or arm) that usually last 5 to 15 minutes, but they reoccur multiple times a day for up to a week.  This is my scariest symptom and the one of most interest to the neuro . . . but it is not - by far - my only symptom.  (My toes were numb for 3 months before I went to the doctor.)  It does seem that my right side is the most "disturbed", and the numb and/or tingling patches are consistent . . . but are enlarging as time goes by.

How likely is it that someone will go forever without a diagnosis?  I would like to just throw in the towel, but I feel rather certain that I have MS or a close mimic.

[Quixotic1]

Hmmm, Your lesions are stable, but your symptoms are NOT.  One of the most common things we hear here is small numb areas that gradually enlarge.

You episodes of sudden - and very brief - weakness seem odd.  I wander if anyone else here has those.  My weaker times always last a lot longer than that.  After the bad attacks of weakness do you return to normal or do you have weakness that persists in between?

There is another entity that causes spinal lesions, and that is ADEM - Autoimmune Disseminated Encephalomyelitis.  This is a sudden attack, which produces lesions,which remain stable or gradually resolve.  The important thing is that the symptoms also gradually resolve or remain stable.  this may be what your neurologist is considering.  The problem is that in ADEM the LP is usually negative.

Is your neuro just telling you what you don't have without making any further effort to find out what is behind your increasing symptoms??  If so, this is lazy nonsense.  Also, on this forum we have a large number of people who have been diagnosed with MS, then had their diagnosis removed and later found that it was, indeed, MS.  I worry about that for you.

That's why I still think a second opinion on the MRIs is a good idea.

And I think a second opinion on the diagnosis is also a good idea.  Just becasue a doctor calls himself an MS Specialist doesn't mean he/she is good at it.  There is no certification or qualification currently for being one.  My first evil neuro called himself an MS Specialist and was listed with the National MS Society.  He caused me to lose two years (during which my MRI did not change) when I could have been receiving treatment.

You might attend an MS support group and see who the good ones are and who to avoid.  That is a pretty good way of seeing who the skunks are and who is smart and listens.

I think limbo "can" last forever.  This would be due to not having a recognized illness, a neuro who can't think beyond rigid rules, giving up the fight because of the battering on the self-esteem or financial constraints.  I don't think it needs to.  Did you hear that Craig (Monotreme) finally got the diagnosis (PPMS) after more than 8 neurologists?  He saw an internationally known guy in New York who put it all together - in the same way I did -  but, I don't count.  It's frustrating.

Quix

[risnerrose]

You most definitely count!  You have provided validation that has often brought me out of the "I'm nuts" self-diagnosis.  I have been so blessed to have landed on this forum.

As far as the weak episodes - although I regain the ability to move my limbs, my arm and leg will be fatigued for days afterwards.  It is almost as if they have had a seizure.

Also, I only have brain lesions.  The spine is fine.  I suspect that rules out ADEM.  I am getting no feedback from the neuro about other possibilities, except he did say there were too many to attribute them to migraines. I have regretted not having the LP in July.  It would have shown if I had suffered a one time assault, right?  Of course, I had the possitive LP one year after I had the first positive MRI.  I would think that a single assault should have been cleared by that point, but I truly have no clue.

I did notice that Craig was finally diagnosed, and I have been shocked that it has taken so long.  I did not remember that he had gone to New York.  I thought he lived in your neck of the woods . . . didn't the three of you meet this past year?  I do hope that a diagnosis brings him relief (mentally and physically).  MS and limbo have a way of wearing you out - body and soul.

I'm heading on to bed, thanks for lending me an ear tonight.  I was preparing for a pity party, but I feel like I've had a little therapy now.  Thanks so much.

Sherry

[Quixotic1]

Oh, my!  I didn't mean that my opinion is worthless!  Thanks to everyone who protested.  It's just that some of these things I see so clearly, but I have no effect on people getting the diagnoses they need.  I feel pretty helpless and frustrated a lot of the time.  Maybe that's why I push so hard for people to find better neurologic care.

But, thanks to all.  You are all so sweet!

Quix