HAD NEURO APPT AND NOW HE STATES NOT MS..HELP CONFUSED

[AMERS389]

Hi All, I need some HELP please. Okay, briefly was diagnosed by 1st neurologist Dec 21'st with MS after I experienced numbness, tingling in chin,lips and right side of face and when they did a MRI of brain it showed atypical T2 weighted signals in the subcortical white matter of the right and left insula and a few puncutuate areas of increased T2 weighted signal are present in frontal lobe white matter. Early findings of a demylinating process cannot be excluded. So then the neurologist ordered a LP which showed oligoclonal bands. My neuro exam mostly normal except for brisk 3+ reflexes and postive Hoffmans.So I guess with those results, ruling out other things like lupus, scleroderma etc by blood tests. But I wanted 2nd opinion and actually wanted the best neuro in Austin who only treats MS patients and is well known in Texas. Anyways had to wait 4 weeks for appt and finally had appt yesterday. Well he looked at brain MRI and states there is definite lesions but not in typical areas for MS.(such as corpus collosum) Then he said with all my symptoms of pain, aching , numbness, burning of r side of face off and on all day now for 2 months, getting worse, more painful said I have trigeminal neuralgia. He says MS patients get this but if it was due MS then I would have a lesion in pons or brainstem since that is where cranial nerve 5 (trigeminal) originates. So now back in limbo with another diagnosis of trigeminal neuralgia, but most likely not MS but because suspicious wants to repeat brain MRI in march to see if any new lesions. If not then really will believe it is not MS. But I still have wierd other stuff, extreme fatigue, muscle weakness in r arm , change in bowel, also had two occasions 4 months apart of my perineum just going completely numb, could still pee just could not feel it. Occasional problems with mental focus, short term memory loss(this could be old age too I am 48 LOL)
Now I know I should be grateful it is not MS, but one doc says yes the other(more experienced says no) but I guess I have had so many things going on for a year or so that I wanted just one clear diagnosis not three seperate things..and still the ? MS if there are new lesions. I just need to vent,  I have already cried and tried to see the gift but I am so confused. What if he is wrong, and I don't start on the preventitive meds for MS and have another relapse but this next one more severe....If anyone can share their experiences and so on please help me...Sorry to be a downer...just scared, confused and needing answers...Amers

[AMERS389]

Thanks for info on 3T, typical to have it at UT for research only...Oh well, I usually go to ARA and they have the 2T so that will have to do..Good luck soonermom with getting your MRI covered.
Quix, I understand your point with my doctor, but I need to give him a 2nd chance after I talk more openly with him. I think I was a bit overwhelmed and shocked that he did not think I had MS so once he said that all the stuff I thought of to ask went out my head...
Okay, going to do some more reading...on TN and MS
Amy

[SOONERMOM]

Would you happen to know if any of the 3T's in Dallas are freestanding sites (not inside a hospital)?  My insurance doesn't want to pay for the "outpatient" MRI's.  I think the only 3T in my area(OKC) is in the university hospital and I swear I read they use it on animals only--what a waste,-- surely that is wrong??

[biowham]

There's a 3T in Austin, but it belongs to UT and is for research use only, not clinical use. Kind of stupid, really. So the closest one of which I'm aware is in SA. And there are 3Ts in Dallas and Houston.

[Quixotic1]

I suspect that Dr. Fox is a good doc, with all the people with "classic MS" that he has diagnosed.  Being a lesion counter doesn't make him evil.  It's just that his view of how MS presents is narrow and rgid. People who don't present with the perfect combination of clinical findings and MRI lesions won't ever get into his practice.

Quix

[AMERS389]

Dear All, Thanks so much for posting reponses..I almost feel normal and not crazy loco when I hear your stories. Quix, first I think I understand now that because he dx me with TN, it is statistically more likely that I do have MS rather than something else. I think I will take your advice and find a MS group and get some input.

Stacey, Okay neighbor..I hold nothing against ya...how could I we are going through the same stuff. It stinks, from your description it sounds like MS..I mean 13 lesions and numbness, on your whole left side and now you sound like you have some spascity in muscles. You poor thing..don't be scared we are gonna pray for you and a sure diagnosis. I would not wait till June though, I would push them for the 3 month from last attack or MRI. Take care and let us know for sure. My brain MRI said it could be vascular too but first neuro said if it was vasculitis then he would expect my ESR to be elevated and it was not..check into that maybe...okay thanks and good luck ..

Biowham, I think I will still go back to him, he wants to see me in a month to see how meds are working for TN and I will come armed and hopefully braver to show him I know some stuff from researching...I wonder if there is 3T MRI in Austin...also how do you like your first neuro Roy?? Do you have a definite diagnosis of MS yet? I know a friend who has MS and loved Dr. Fox so I don't want you to exclude him cause of his counting my lesions, I am presenting atypical so think about that too. Take care, let us know the LP results...Praying for you and all of us in this position.

Thanks Quix for telling me about paragraphs...good point..I tend to type without punctuation and stuff ...lol..Any good websites you recommend as a MD to research on MS??  Thanks Amy

[biowham]

Wow, I'm concerned about your post for you and from my own perspective. I'm in Austin, and depending on my LP results, my neuro (Roy) may refer me to the same specialist you're seeing. I don't want a lesion counter. I don't like doctors like that. I may look into specialists in San Antonio...there's a group down there that has a 3T MRI machine, for one thing. You should look into them.

Go back to that guy. Tick off the list: TN, lesions in white matter, O-bands, hyperreflexia, Hoffman's sign. Good grief. Find the current criteria (just Google, or maybe Quix has them written up here somewhere and someone can bump), and point out to him that NINE lesions is NOT the only criterion or even in the only set of criteria. There are several categories of criteria for dxing MS. I'm SURE this man knows that, but you need to show him that you know it. And ask for a referral to the SA 3T MRI people. Man. Show him you're informed, and he may stop treating you like just another algorithm. That irritates the **** out of me when they do that.

E

[SOONERMOM]

I have a similar story to yours.  My symptoms started in Oct. with a small numb spot on the left side of my face and has grown to the whole left side of my body (except front of the trunk).  I have only had a few instances of the stabbing pain in my face and have only had the burning/vibrating/tingling etc. going on (including my gums).  I recently lost feeling in my throat  (left).

My reg. Neurologist thought (thinks) I have the beginnings of MS.  I also have WML's in the subcortical white matter (@13).  I recently went to the most well known MS specialist in my area (took me 3 months to get an appt.) and he told me that I only have a small chance of having MS because of the location of lesions and length of symptoms  (too long).  He thinks whatever is going on is vascular in nature.  My MRI reports mention demyelination and never anything vascular or even migraines.  He just found that my reflexes are hyper, which my own neurologist finds a week later.

I am now starting to have some muscle issues (they can't relax) and wonder what shape I will be in a few months.  I know that the doctors are just waiting for my next MRI  in June to see if there are any changes.  The specialist even suggested waiting 9 months (GULP!)  I haven't had an LP done because it won't make my diagnosis at this point anyway.

Anyway, I guess my whole point of this post is how frustrating it is to have to deal with all these doctors and their differences of professional opinion.  (including the radiology reports)  I know for a fact that if these things were happening to them or their family members they would not be content to wait 6 or 9 months and watch deterioration take place!

I am in shock, I guess, that so many of here have so many problems and no Doctor can diagnose us.  Aren't there just "so many" things that can go wrong??   I just called and set up an appt. for life insurance.  I will probably learn more about my condition when they deny me!!  LOL--(I hope they don't test my reflexes)

I guess I shouldn't be surprised because Quix was a physician herself and had these same difficulties (and more).  I am glad I have found all of you here because I think I would have LOST IT by now if I hadn't!!

Amy, I am just up I-35 in Norman, but don't hold that against me!! hehe

Stacey

[Quixotic1]

Oh, Amy.  I, too, believe this is TN.  I'm not sure your understood my post.  Statistically, a person with TN is more likely to have MS than not.  With suggestive symptoms and signs on physical exam, you DO NOT need 9 lesions.   This likely is because he does not see 2 clear attacks or evidence of the disease spread out in time.  I was diagnosed with one lesion and one band.  This doctor Fox is a "Lesion Counter."  HE believes that lesions have to match, but many experts in the field do not believe this.

With what you have told us, I think it is likely that you fall into a group of people that is more than 80% likely to have MS, but don't yet make a sure-fire diagnosis.  This group is felt to have a Clinically Isolated Syndrome.  MS Experts around the globe believe that this group should be treated with DMD's (MS meds) to prevent the full-blown diagnosis.  This alone would make me urge you to look for that 3rd opinion.  If your friends are going to think you are only after the MS Diagnosis, don't tell them.  You know that what you want is out of the darkness of not knowing.

You might go to an MS support group meeting and ask who there had trouble getting diagnosed becasue they weren't typical.  See if there are a couple that can recommend an MS neuro who thinks outside that little box.  

So he doesn't diagnose "atypical" cases.  He's going to miss a lot of MS with that attitude.  You need to know that he represents a fairly large group of neurologists.  Others believe that the diagnosis can be made by putting the whole picture together.  It is not for me to state which is the correct philosophy, but I do know which one makes sense to me as someone who had an "atypical" presentation, but who now has very definite MS.  Many of us have sought a 3rd and even up to an 8th opinion.  

Of course, we all know that what you are after is not THE DIAGNOSIS of MS, but rather an end to not knowing and not being able to move forward.  Deep down inside, one of these doctors makes a lot more sense to you than the other.  When my first neurologist told me I was too old.  I accepted it.  Adult neurology was not my field.  But, as my disease progresses and he ignored everything, I knew he was missing something.  That began my studying of MS and how it can present.  After a few months I KNEW that I must have MS.  Nothing else fit.  But, I still believed that I was too old - maybe.  I looked for someone to give me a better answer.

For my TN my doc chose the old stand-by Carbamazepine.  It's an antiseizure med also called Tegretol.  I've onlu been on it about a week and I can't tell if it is helping yet.  It's major side effects are unsteadiness and dizziness, which have made this week hard with my chronic vertigo.  We'll see.

Amy, I'm also going to ask that you try to break up your posts into smaller paragraphs.  The big long posts are hard to read for those of us who have trouble tracking smoothly with their eyes.  The shorter bits of writing are easier to read.  Thanks.

Well, we'll keep talking becasue one of the major reasons for this forum is to help people floundering without a diagnosis or whose doctors are at war with different diagnoses.  Given the info you have given us, I do not see the problem, but, online we really never see the whole problem.  Hang in there!

Quix

[AMERS389]

Thank you so much Quix, I was hoping you would be one of the people to reply because I have read many of your informational posts and they were so very helpful.  Okay on the LP I had 4 IgG bands in the CSF that are not visible in the serum. The IgG index was 0.85 range on form is 0.28-0.66 so it was high. I do believe his diagnosis of trigeminal neuralgia is correct because many diagnostic criteria fit like if cold air hits my face it sets off the pain cycle. It did not start off too bad, just numbness, tingling in lips and chin but it was bilateral intially so first neuro not sure it was TN, but as the 8 weeks have passed it has worsened, now just on right side from numbness, to pain, to  deep stabbing achiness, to burning, it does hurt to brush my teeth too, I too thought it was dental problem first week and saw dentist and the teeth were great...so I am not too happy to have this TN but started on Lyrica and Ultram ER for the pain and hopefully this will help, it has worn me down...I don't know who else to go to..I am so frustrated...I feel helpless like there is nothing I can do to get answers. I guess I could just wait till March 1st when I get 2nd MRI of brain and see what it says. I did not know it does not have to match area with lesion..yes Dr Fox was going by this list of things, said I needed I think 9 lesions and I think I only have four...not sure though ..and although I have heard great things from some of his patients he really was nice and sincere and said I just do not fit typical pattern. But I do like your name"lesion counter" I felt like I was back in nursing school and had flunked my exam...lol gosh shall I go make more lesions...Well I need to talk to my primary MD, I work with her and she is great and has been working for awhile to figure out my oddities...and maybe will look into 3rd opinion...I feel like my family and friends will think I want to have MS, it's not that I just want a solid answer(which I thought I finally had from 1st neuro) and not three seperate diagnosis which are now 1. TN   2. UCTD and    3. Chronic myofascial pain syndrome..Thanks so much Quix and nice to meet you. Sorry to hear you too have TN...it is not a fun diagnosis, it is in top 5 for pain specialists...I am praying to get some relief with new drugs...Are you on either of those?  Gosh I am talking too much..Okay thanks and God Bless you....I will keep in touch if that is okay with you..Amy in Austin

[Quixotic1]

Hmmm...You have definite signs of white matter disease with the hyperreflexes and the +Hoffman's.  NO, 48 year olds do not lose their minds, nor their sensation to pee!  The second neuro, the MS specialist, is trying to match all your symptoms to your lesions.  The best literature I have read states that this is a waste of time.  Even the MS Society states that i in 20 people with MS have negative MRIs.  Does this mean they have no lesions.  It can't!  It means the MRI has not picked the images up.  I had no lesions in my brainstem and spine on a 1.5T machine.  A month later on the 3T I had 6 old lesions.  What can we say about the earlier test?  The lesions were invisible on it.

All I can do is tell you about my last visit with my MS Neuro - whom I think may be one of the brightest doctors I've ever been around.  I went in telling him this long story about these excrutiating pains I had during chewing for the last 15 months or so.  Sometimes they'd happen frequently (always with the pain in the same molar) and then would disappear for a few months.  I thought I was putting off a root canal.  (You can NOT imagine how I dread the dentist!)  Finally just before Christmas, I had a bout that put me into tears for hours!  The pain spread all across my lower face and upper and lower molars like I needed 5 root canals and my jaw was brokenI saw the dentist emergently in the morning.  Yes, totally healthy teeth.  .

I told my Neuro about it and he said "classic Trigeminal Neuralgia"  We looked at my 3T MRI from a few weeks ago and he said, "Well, there's no lesion in the brainstem to account for the TN.  It's still invisible.  That's good!  You don't want a large lesion in the brainstem."  He knows, as do I from my reading that we all have many, many tiny lesions, some causing symptoms, that can't be seen on the MRI - and maybe never will.  He looked through the MRI to the truth in the patient.

In reality it does become harder before you have the diagnosis.  But, here is where I find his reasoning to be faulty.  In the general population Trigeminal Neuralgia occurs in 4 to 5 people per 100,000.  In MS the occurrence is just over 3% or 3000 per 100,000.   In the general population most occur in people over 50.  When it occurs under age 30 it is almost always due to MS.  If it occurs bilaterally it is almost always due to MS.  So in the setting of a woman with White Matter Lesions AND +Oligoclonal Bands in the CSF AND Corticospinal (or pyramidal) tract signs on neuro exam AND suggestive symptoms,  I think he was being dense by ruling out MS because you didn't have a visible lesion.  He is being quite rigid minded (a characteristic I do not admire) and is what I call a "Lesion Counter."  

Do you see my reasoning?  If you came in off the street with TN, I would ask you about all of these things and when they were all positive, the TN would strengthen my case for diagnosing MS, by the very fact that you have it.  

Are all MS Specialist the best MS doc's?  Sadly no.  We've talked about some real doozys here.  My first "evil" neuro was billed as an MS Specialist and was named one of the "Top 100 Doctors in Portland."  He told me I was too old and misread my MRI!

The diagnosis of MS is a clinical one.  The MRI and LP should play a supporting role and the lack of a "visible lesion" should not be the swaying factor.  The real experts (who wrote up the McDonald Criteria) were clear about that.  

I realize how "stuck" you are with this.  The guy you went to as the expert threw it all out.  And who am I to say he is wrong?  But, I see real flaws in his reasoning.  Either go back to your first neuro and proceed with him, or seek a third opinion.

BTW - how many O-bands did you have?  And what was the IgG Index?

I hope this helped some.

Quix