Welcome to the board. We have a lot of very knowledgeable people here who will be able to talk, provide information and support, and listen. We also have a lot of health pages you might want to read since they sift through and clarify much of what you're finding on the Web.
Before I go on: ADD is not a "fad" disorder. It is a very real disorder that arises from an imbalance in the dopamine signaling pathways. For people who live with ADD/ADHD, it can be a misery, and the drugs that work on it have side effects in children that are not good. CFS is also not a "fad" but established, and depression? Nothing that is "fad" about that--another neurotransmitter imbalance that can be extraordinarily resistant to correction and lead to suicidal ideation, destroyed families, destroyed lives.
Now that I've gotten that off of my chest (sorry, I live with two of these "fads" in my home), it sounds like your doctors are following the criteria but not pursuing treatment, in which case I, and most folks on here, would suggest a second opinion. You fit dissemination in space, whether the "spots" are "inactve" or not. Spinal lesions have only a very few etiologies, and can be almost pathognomonic for MS.
We have ranted quite a bit here about incompetent doctors, but it's usually because of doctors that are too fearful of their own expertise on exam, who rely too heavily on imaging results, who do not follow the rule that MS is a clinical diagnosis. Your situation is an ironic reverse: Your doctor is doing the same thing to diagnose you WITH MS, rather than using clinical findings in conjunction with imaging. I imagine the spinal lesion is what sways the case there. Where your doctor is being "incompetent" is in not starting you on DMDs if MS is truly the diagnosis.
I'd suggest getting a second opinion, both for the dx and the approach to any dx. A case as complex as yours sounds would require that, anyway, in my book.
Welcome to the MS forum.
1st things 1st - no worries, ranting is fine here....
Ok - appears to me you feel 2 ways here -
1) You are p'sd to say the least that you were dx'd with MS and (and if I'm interpreting it right) you disagree w/the dx because you have read the chart and feel you don't meet the criteria. You feel it will affect too much of your life, your job etc.
It's ok to feel uncomfortable but like Bio says, please get a 2nd opinion. I didn't believe my Dr. either, but I was in denial because I thought they were missing something. I could not have been more wrong.
2) Part of you wants to get a grip on whether you have it or not so you can move on and treat it, or not treat it.
There are some positives in your story which include being fairly symptomless at this time, no new activity on your MRIs, which is all good.
My question to you is...Are you looking for an incompetant Dr.? One who will not use the guidelines and not dx you? If so, we all here seek professionals who do not practice this way. (If I've read your question wrong - please disregard)
Though further inbetween, we do have success stories of folks with caring Dr. willing to seek dx and go the extra mile.
If you can, please read our health pages - it may shed light on why you were dx'd with MS.
I am new here and I too am looking for answers ANTWHERE I can possibly find them. I am lucky in that the inquiry is not for me personally but for someone near and dear.
I seems that you are about as frustrated as I am with lack of answers and I think you are being treated here like you are in an AA meeting. There you say you aren't an alcoholic but they say you are in denial....Here, you say, Maybe I don't actually have MS and I personally feel you are being patronized into the "just accept" the damned diagnosis.
My friend has be dx'd with MS but has had no Lumbar Puncture. He presented with pain in his feet and weakness in one leg. He has since lost balance, coordination, speech structure and had illness like symptoms (ie flu) All of these symptoms seem exacerbated by the bloody Rebif jabs he takes 3x a week.
I have an appt for him scheduled for 10 June and I feel we will get another dx....Until then does anyone know what damage this Rebif shot could be doing to someone w/o MS? He's being encouraged to continue and "drink lots of water" but this is of course by the bloody mfgr of the drug itself.....It makes him as sick as chemo makes cancer pts. He missed a jab this weekend and he was feeling better than ever.......
I too see that ADD/ADHD, Fibromyalgia, CFS and others are being TREATED as fads. I don 't think Maria was insulting you/you fam members or anyone for that matter in down playing it's seriousness...It just seems to me that the more medicines that become available the more conditions become widespread. It's no coincidence that ADD/ADHD became nearly pandemic the moment Ritalin hit the shelves...Same goes for Chronic Fatique and Provigil. That is a narcolepsy medicine and it's cost is nearly 1200 USD per month. As there aren't so many ppl falling over like fainting goats the company found a way to attach it to CFS....A very real condition for some but also a by-product of a hard days work and hypochondria as well.
None the less, I'd like to know if anyone knows what steps we should take in the Rebif continuation....it makes him sick as all hell. SHould he stop until 10 June (next appt w/new dr.) Or deal w/side effects and possible liver damage until then.
Thank you for any input and may your healing continue for all...
Welcome - If you can do us a favor and post your questions in a separate thread so they are sure the get the attention they deserve, that would be great. Lots of times people don't read all the responses to the initial question and I'm afraid you won't get the answers you need.
First let me welcome you here and tell you how sorry I am that you have joined the ranks of those of us with MS. Yes, it can be a MiSerable disease, and feel like a blight on your records.
Since you are so sure that you don't have MS, please seek a second opinion immediately. I am a strong believer in instinct and if it doesn't feel right to you, it might well not be.
If it comes back that you definitely do have MS, then I would be having your tantrum with the doctors - tell them if you are dx'd, even with CIS (Clinically Isolated Syndrome) you need to be on a DMD now and not later.
Its a **** shoot waiting to see if something might happen to set of the "ticking time bomb in my brain that could explode at any time, render me completely disabled pissing all over myself and/or blind" as you so eloquently wrote. That's a gamble that you don't want to be on the losing side of if it happens.
BTW, MS patients don't go blind; it is anatomically impossible to **** all over ourselves (I don't think even the men can do that!) but we do dribble down our legs sometimes; and despite having MS none of my companions have had to clean up exploded brain matter off the walls. :-) My point is that for most of us, having MS is no where near as dramatic as you might think from the images. In fact, that majority of MS patients continue to walk on their own power, take care of themselves, and function efficiently at jobs and family life.
Please take the time to look at our health pages - they contain some of the most accurate information on the WWW. Come back and keep us posted on how you proceed with the 2nd opinion.
Wishing you the best,
PS - just curious, were you dx'd by Mayo?
It is likely true that more people are dx with a disease when there are drugs available to treat it. This is likely due to both doctor and pt (and drug companies, but actually, I'd argue that that is more indirect).
If as a dr you *think* that a pt might have a disease, but there's not much you can do to treat it, you might refrain from giving that dx, because you think it could somehow make them worse off (work limitations, psychologically, etc.). But if the dr has a treatment, then the instinct is to go ahead and treat, especially if you think the benefits outweigh the risks. But often in order to treat, you need to dx. This is certainly the case with ms, because most insurance companies would put up a big fuss about paying for DMD if there isn't a dx of MS.
If you're a pt and your sx are bothersome, but you can live with them, and there's no treatment available, you're less likely to pursue a dx. If on the other hand, a treatment (DMD in this case) is available, most people would be more inclined to seek a dx in order to see if the treatment might help them, or at least slow the progression of their sx. This isn't people thinking it's a fad disease that they want to jump on the bandwagon for, it's just that they want to be able to treat what they have.
The way I see drug companies coming into this is through advertising. They make people (pts and drs) aware of the treatments that are available and whom they might help. Is this bad? It depends on how truthful drug companies are being (how much can they help? who do they help? for what specific sx or diseases?)--this is where regulation comes in, because left to their own devices drug companies would likely overstate the effectiveness of their drugs. But overall, I think it's good that both drs and pts know of treatments. Especially for problems that pts might be hesitant to voice to their drs (an unrelated on, ED, comes to mind...)
Just my thoughts.
Hi Marie - Me again. Please know by no means was it my intent to disrespect you as was insinuated above - I care too much about the disease and the people it affects to do something like that - hope you know that.
Avasmama - I don't believe Maria was insulting anyone here - just a vent or rant as she indicated and looking for input. I'm an open book with my experience and simply shared my denial and what I've learned. I'm on Rebif if you'd like more information for your friend.
Ava's Mom - Wow, what a discussion and one that brings up a lot of interesting topics in the diagnosis of MS. First, Welcome to the forum. I'm going to answer your post directly, even though a lot of others have also done this and have said much the same things that I will say.
I also heard a couple different rants in your post.
The first was how can you be diagnosed when you don't in any way meet McDonald's Criteria?
The reality of MS is that there is a large number of people with MS who don't meet the Criteria. In the hands of an astute neurologist the diagnosis can be made outside the Criteria. HOWEVER, there are certain parts to the disease which really are needed, and you have mentioned those. These are clinical symptoms and physical signs (abnormalities on neuro exam) that show that the disease is advancing in both time and space. Granted some of the evidence can come come from the MRIs. Along with that there is the need for "there to be NO OTHER BETTER EXPLANATION. You feel that you do have an explanation for the couple of abnormalities they are claiming: You have a congenital eye disorder that can skew the VEP and a problem with fascial compartments that can damage the nerves (I assume, through pressure). It is not clear if your doctors have done the "Rule out of other diseases (mimics) through the necessary blood tests.
So, in your mind, other than the MRI lesions, you have good explanations for any signs and symptoms. Given that you have the two pre-existing conditions of the eyes and the leg compartments, it sounds like your doctors are missing any evidence that the disease is advancing in time, right? Your MRIs are static. How long have they been static for? That the MRIs are static does not disprove MS. MS can have stable lesions on MRI for years, even without therapy.
So, at worst you might have MS, in which the signs and symptoms have not yet shown up or in which some of the signs are being muddied with the possibility that they are being caused by prior conditions.
In your mind, the doctors' thinking seems to be sloppy and outside the current Diagnostic Guidelines. From what you said, I don't disagree with you.
Your second rant is Why do these doctors who have made this diagnosis of MS, now want to just wait and see if you will get worse?
I am in total agreement with you. If the diagnosis is made (as opposed to suspected) then it is stupid not to want to begin treatment. All the current knowledge is that MS is a disease that is best treated AS EARLY AS POSSIBLE. The meds work best the earlier they are used.
A third rant I heard in passing was: That just the diagnosis of MS would ruin your life and your career.
I was puzzled by this. Did you mean that the mere "diagnosis" of MS (perhaps by its stigma) would ruin your life and your career? Because the disease itself, usually does not, though it can. Most people continue to work and raise faimilies - enjoying life with the occasional "bump" in the road.
Finally, the whole thing seems to be summed up as, "You don't believe the doctors' are correct in their assessment that you have MS. AND, IF you do, then why the frak are they not treating it as the pervailing wisdom demands?
With these kinds of doubts, you certainly need a second and probably a third opinion on your status. This should probably be at a place that is known for quality diagnosis and care, like we have found with a few of our members at NYU with Dr. Herbert.
As a few people commented, your first problem - that of the doctors flying to the diagnosis of MS in light of very flimsy evidence, is exactly opposite to what we usually find here. Many of us have suffered and fulfilled McDonald's Criteria, only to have our neurologists afraid to commit themselves or too arrogant to admit that we are not just hysterical over a few symptoms.
You mentioned the Mayo. This is a place that we have been repeatedly (though not universally) unhappy with as they are the great proponents of the "Wait and See" approach after a diagnosis of what appears to be a mild course of MS.
Finally, I have to say that the diagnosis of MS is often not clearcut and thus, the doctors have to make their best educated guess. It's just that some doctors are better at the fuzzy side of diagnosis than others.
I think you need to bring in some other good medical minds (opinions) here.
Welcome again. I am the local medical person here, a physician with MS who was not a neurologist, but I try very hard to understand the problems on the subject.
I hope we have helped.
I didn't intend to disrespect anyone, either, and I will always take the opportunity to debunk perceptions about the reality of certain disorders that are personal to me. Maria sounds like someone with a VERY complex case history who would benefit, as Quix and others have said, from more expert opinions. And I suggested the Health Pages because they do a great job of streamlining and clarifying so much of the overwhelming information one can find at Google U.
Hi, Your friend has a goldmine in a friend as concerned as you. Though I disagree that MS had become like a fad diagnosis, I do know that some doctors may jump to it far too early and irresponsibly.
An LP is not required in the diagnosis of MS. In fact, it is falling from favor as a routine test all over the world, especially Europe. If the diagnosis of MS can be made without it, then it is usually not done. If the LP is done and it is negative, it DOES NOT negate the diagnosis. It is only helpful when it has positive results.
As for the Rebif - the likelihood of liver damage is small. Your friend does seem to be having the "flu-like side effects" that are so common with the Interferon-beta-1a meds. These do no lingering harm physically. You didn't say how long your friend has been using the Rebif, but those side effects usually lessen, by a great deal, months into the therapy. It is not uncommon for a person to need to change the MS med because of side effects. But, please understand that these side effects are not dangerous - they can, though destroy the quality of life and that is unacceptable also.
Something your friend should know is that Rebif (and it's cousins) are NOT like chemotherapy in the cytotoxic (cell-killing) effects that chemo has. Not at all. Interferon-beta is produced in the body as part of the immune system's defense against (usually) viral infections such as influenza. Those "flu-like" symptoms you get when you actually have the flu are caused by the increased production of Interferon-beta in the body. The are reproduced when it is used in Rebif or the other interferon meds. The immune system is not being suppressed, but rather one part of it is being enhanced - modulated.
Whether your friend should continue Rebif is something between them and their neuro. If the symptoms are disabling, then the doctor needs to know this, because then the treatment is much worse than the disease and perhaps he would do better on another , such as Copaxone which does not have those side effects . If there is worry about liver damage then your friend's PCP can do regular chem panels to check for early signs. If your friend shares your mistrust of the diagnosis, then he/she must decide if following the current treatment is what they want to do.
I would suggest that you be careful about making sweeping generalizations about people, doctors and meds (or anything, for that matter). Such generalizations are often more false than they are true and they speak to a poorly thought out belief system. Also, be more careful with your facts. Provigil is NOT just a narcolepsy med. It is also approved for Shift-Work Fatigue (a disorder far more common than narcolepsy) and is accepted within the MS community as the best med we have available for the incapacitating fatigue of MS. Your view of all of this seems as narrow-minded on your part as your claim that it is all greed-based on the part of medicine and Big Pharmaceuticals. Clearly you have never suffered totally crushing fatigue. ....Walk a mile in our shoes...
Thanks much. The perceptions of Mayo are really appreciated. I need to find someone, which between UCLA & USC there oughta be someone that has an idea about MS, for a third opinion.
And oh yeah, this diagnosis puts an end to the career path I was following. You can not do government contract work for which travel is required with an MS diagnosis, no matter how inactive or "benign". Those that are already "in" are usually grandfathered or medically retired, but if you are not already "in", so sorry. Several other fields that were my secondary choices are also closed now. If I am *really* *really* *really* lucky, I might get an exemption from one requirement and be #26 out of thousands with that waiver, to have one job left in this field. Otherwise, after spending 20 years pursuing it, the door has slammed in my face.
I'm leaving the field, the doc's offices, and other things unnamed as I don't need to be identified. There is a very negative stigma associated with MS in this field, thus the career ending aspect, plus there is a chance that someone that knows what the fark they are doing will reverse the diagnosis. Of course certain agencies will then make up their own minds on if they'll accept that reversal.
My comments about ADD, CFS, and depression come from the last 20 years of experience. When doctors don't know what to do, they come up with those labels, along with hysteria, fibromyalgia, GERD, and so on. Sure, there are legitimate cases that do need treatment for all of those conditions, but when the diagnostic criteria is skipped and the doc just writes a prescription, or the patient comes in and demands the drug they saw on TV, that's a fad disease. As far as MS goes, I have three cousins, not directly related, that have MS. One is in a nursing home without bladder or bowel control, one is running marathons, and the third passed on after an attack shut down major organs (primary progressive?).
I see your point about the stigma being a "death knell" for certain careers. That is what I thought you meant and I am so sorry for that happening. No wonder you are angry - besides the other carp.
You clearly have a view of the spectrum of MS.
I hope you saw that I did understand your anger and outrage at medically sloppy thinking.
As USC and UCLA are my medical alma maters I wish I could point you to the top good people, but I am too long gone to know. I looked up both of the MS Centers and the one at UCLA appears to be the most comprehensive. Beyond that, and one enthusiastic recommendation at the "msneuroratings" site for a UCLA doc, I don't have an educated opinion.
I'm glad you joined us.