How long with no lesions is "too long?"

[tweezer]

Hi, all. I haven't been on this forum in some time because I haven't had a clear MS diagnosis, have been experiencing significant medical setbacks, and decided to just live as well as I could without the stress of more doctor's appointments and tests.

My question is, simply, how long without lesions can MS be definitively ruled out and you stop having serial MRI scans?

Here's a brief summary. First symptoms in 2008 (HSV transverse myelitis). No MRI scans performed at that time. Using the MS protocol, clear brain, cervical, thoracic 1.5T MRI scans in 9/2010. Fell and hit my head in 8/2011: clear brain 1.5T MRI scan (not using MS protocol but I assume it has some reliability)?

My left ankle and foot started dropping out of nowhere in 6/2011 at the same time my right toes became numb for no reason. In 9/2011, I had brain and cervical MRI scans on a 3T, which made really, really dizzy and hot. I was told they were normal/no MS.

In 10/2011, I experienced HSV meningitis. I had a fever, blinding headache, extreme light sensitivity, nausea, memory loss of about 12 hours' duration, among other symptoms. The meningitis and abnormal clinical findings including left-sided hyperreflexia precipitated an unsuccessful LP which I am very reluctant to undergo again (I was supposed to go back for another LP under fluoroscopy but declined). However, I was told that the brain MRI scan performed on a 3T in late 12/2012, when I was just starting to recover, was clear for MS. I started doing much better in early 1/2012.

So that makes it about 2 1/4 years of what I'm told are clear MRI scans for MS. However, I've experienced at least 2 additional bouts of HSV (viral) meningitis and each time, my symptoms got worse, and I developed new symptoms.

I'd previously researched DMDs and the very limited MS therapies and decided that, for me, I wouldn't pursue them if I had MS. So I have not had any more followups or MRI scans since the most recent meningitis.

My neurologist, who I haven't seen in over a year, insisted that I return for repeat MRI scans on a 3T. I got very dizzy in the last 3T scan. The 3T magnet is appreciably stronger and I experienced terrible vertigo while in the magnet (I'm not anxiety-prone and have had many closed MRI scans, so those weren't the issues). Are repeat MRI scans worthwhile at this point? Thanks very much for your thoughts.

I would love to hear from anyone who has had viral meningitis, particularly HSV-related. I did a search for meningitis and found that several members attribute meningitis as their definitive MS triggers. If I am ever diagnosed with MS, I'll know for certain HSV meningitis caused it.

[Redwings]

Hi tweezer:
You have a complicated situation, and there isn't going to be an easy answer to a complicated situation.

When tissue in the central nervous system is damaged somehow, the damage is going to produce the same signs and symptoms no matter what caused the damage. It doesn't matter whether the damage was caused by an infection (viral, bacterial, fungal), a toxin, inflammation, a degenerative disease, physical trauma, a stroke or whatever, damage is damage and the signs/symptoms for damage to a particular area are going to be the same.

Because symptoms are the same, a person has to be worked up for a variety of conditions, based on other information. That explains why MS/CIS was a consideration at the time of your first neurological signs/symptoms. But it sounds like there was no evidence then, or since, to indicate MS.

By your account, you've already had several episodes of HSV meningitis, an episode of HSV transverse myelitis and an episode of head trauma. All of those can cause significant neurological damage. You apparently already have symptoms of neurological damage. And it's certainly no surprise that you would develop more and/or worsening symptoms with each bout of viral meningitis.

Viral infection is recognized as a possible trigger for MS. But even though a person's viral infection is highly suspicious as a cause for MS, it can never be known with absolute certainty what the trigger was in any individual. For example, even if a person who has had HSV meningitis later develops MS, it isn't possible to know with certainty if it wasn't in fact the Epstein-Barr virus they were also exposed to that actually triggered it.

So even if people in other forums say that meningitis was their definite MS trigger, that can't be known with absolute certainty. Just with daily living, we're all exposed to too many possible triggers to isolate just one.

And if you later develop MS, your HSV infections are highly suspicious, but you can never know with absolute certainty that HSV caused it. Your willingness to believe that you'll know definitely sets you up for making other assumptions that can cause trouble for you later. Whenever there's an unknown variable, it always must be allowed for. That will help to prevent you from falling victim to sloppy thinking. Lest you think I'm baselessly bashing you, let's just say that a veteran player can spot a rookie mistake a mile away.

It isn't entirely clear from your post whether you're concerned that MS might be responsible for some of your symptoms now, or whether you're concerned that you might develop MS in the future, since a viral infection might trigger it. Since there doesn't seem to be any evidence of MS now, I'll assume that your concern and questions are about future development.

When you have your next MRIs depends on your motivation. The general guideline that a lot of doctors follow when monitoring for a disease is to test once per year. But that's a guideline, and it's overridden by the development of new signs and symptoms that justify earlier testing.

If you aren't comfortable with MRIs and you aren't interested in taking a med for MS even if you are found to have it, you can wait to have another MRI until you develop new signs and symptoms. When I was in limboland, I was still having flares, but I went years between MRIs because my signs/symptoms didn't indicate that new MRIs were necessary. The trade-off is that the longer you wait, the longer it will take to get a diagnosis. Yearly testing is a reasonable compromise, but it's really up to you.

This is a good place to interject that there are new MS DMDs on the horizon that might change your feeling about taking a DMD.

As to how long you should continue to have MRIs to look for MS, that's determined by individual circumstances. Medicine likes to look at a lot of conditions in five-year blocks, so five years might be a good guideline. But bear in mind that an additional episode of HSV meningitis or neuritis could reset the clock.

Some doctors feel that MS is less likely if lesions consistent with MS haven't shown up within one year of presentation. But I think that's an unrealistically short period of time for two reasons: 1) the timing is based on the "accident" or chance of when a person develops symptoms that are sufficient to seek a medical opinion, and 2) other data don't support the time period. In the Optic Neuritis Treatment Trial, 30% of subjects who didn't have lesions at the time of the optic neuritis episode went on to develop clinically definite MS over the next ten years. That's significantly different than an expectation of lesions within one year, even if it was only 30% of subjects with only one kind of presenting symptom.

Another guideline applies to people who have symptoms without a known cause (unlike you, who have a history of neurological "insults"). This guideline holds that, the longer a person goes without developing lesions that are consistent with MS, the less likely it is that MS is the cause of the symptoms. In your case, you might interpret that to mean that the longer you go without lesions consistent with MS, the less likely it is that MS is present. I'll add here that an LP alone can't definitively single out MS.

All things considered, the guidelines are a bit loose. But from years of studying MS and taking the span of guidelines into consideration, I get a general impression. Considering that one year seems unrealistically short, that medicine likes five-year milestones, and that MS has been diagnosed at least ten years after presenting symptoms without CNS lesions, the time to consider excluding MS is somewhere between five and ten years.

That's a large window, and it's only my best estimate. So perhaps the best sources for a guideline are the people who are most familiar with your case, and that's your doctors. But even with your doctors' guidance, it's all really up to you and your motivation.

Again, it's a complicated situation with no easy answer. From where I stand, the trade-offs are between 1) the fact that most people who have viral meningitis/neuritis don't go on to develop MS and your attention to (fear of?) MS may be out of proportion to the reality, and 2) regular monitoring might help you to identify the onset of MS sooner, when the availability of new drugs might make you more willing to start treatment sooner if you do develop MS. The decision is yours.

[lusciousleaves]

Tweezer, I know this is off topic for your question but I have to ask, have they worked you up for immune system disorders? HSV meningitis x2 seems like kind of a red flag for a partial immune deficiency.

[Spydre]

My question would be, have they done MRI's for C-Spine and T-Spine? Some of your symtpoms could be caused by lesions there, or as Redwings also said, neurological damage from the HSV Meningitis.

[Special Kay]

Good reply from Redwings and others.

My MS trigger was HSV and it was very direct and unequivocal according to the doctors I saw at the time, including infectious disease and HSV specialists. I had no herpes exposure previous in my life (highly unusual), so my immune system was triggered into autoimmunity by this very foreign virus.

However, I did then and have subsequently tested positive for lesions on all my MRIs -- one large lesion on my cervical spine and two small spots on my brain. But because of the nature of my trigger, I was initially diagnosed with Transverse Myelitis, and then CIS, and then MS.

Your recurring HSV infections seem like you are not being controlled with acyclovir or one of its derivatives. You might consult an infectious disease specialist because, as someone else, indicated your immune function is suspect. HSV is very manageable, even for people with suppressed immune systems, and the current drugs have good safety profiles even at large doses.

It does not sound to me like you have MS, but that your HSV infection is not being managed.

[Special Kay]

I should add, for what it's worth, that I started taking Avonex when I was first diagnosed with CIS (i.e., before I was diagnosed with MS).

[tweezer]

Thank you all so much for new information. I realize I should have worded my question "how long is long enough?" not "too long?" I want to be able to rule out MS and not have the stress of more tests and more time off work.

My HSV infection is very poorly managed. I continue to lose function and feel worse. I have cycled through all 3 available antivirals at high doses without much success, though Famvir has occasionally been helpful and stabilized my condition after the first meningitis. I felt well enough for the first part of this year but one day I woke up with terrible symptoms, Famvir proved ineffective, and I've been declining since.

We know there is a definite autoimmune component to my problems because after recently not being able to function for 2 months, my ID doctor threw up his hands and prescribed a week of high dose steroids, which he said he has never done before. The combination of antivirals (at 3x the daily recommended suppressive dose, requiring regular kidney function monitoring) and Medrol helped me function for 3 weeks...until it started all over again.

Through regular labs, I learned that I've had lymphocytosis for at least 3 years straight which, again, supports my theory that I'm constantly fighting a viral infection. I'mconvinced it's HSV, but as Redwings said, proving it is a different story.

My ID doctor treats HIV patients almost exclusively (as do most ID doctors I've found and the ones who don't focus on hepatitis C) and he has not even seen an HIV patient present this way with HSV, let alone a person without HIV or other "typical" immunocompromise. So I am trying to establish care with an ID doctor who has seen unusual HSV presentations. I think part of the problem is I have not had a successful LP yet. Special Kay, what was your timeline and presentation and did you have a positive LP? I could get another one, but I was out from the first (3 attempts at different vertebral levels--horrific spinal headache) and don't have that sort of time to take off.

The ID docs I've seen are obsessed with lesions when it comes to HSV and that's another problem. Unfortunately (?), I also rarely have visible lesions, but in the past, I've had lesions in my eye, eyelids, ears, cheeks, inside the throat, inside the nose, neck, underarms, upper arms, fingers, and more places--but I couldn't get to the doctor quickly enough for a positive culture. These are places I could not possibly have been initially infected initially (I can pinpoint the month and year since I, too, had no previous HSV exposure at well into my 20s) and all suggestive of neuronal and/or hematological viral spread. I have episodic HORRIFIC vertigo, headaches, ringing, nausea, and vomiting caused by HSV which has also set up residence in my inner ears (vestibular neuritis). I have bowel and bladder dysfunction. I have a fever every day. My left foot drops and my right foot stays numb (when I'm having a particularly big exacerbation, the numbness extends up to the thigh). I'm symptomatic 24/7 so it's hard to pinpoint what's HSV and what's potentially autoimmune or other nervous system issues.

Special Kay, I certainly would appreciate if you, and others with similar presentations, would contact me regarding HSV and HSV-triggered CIS, MS, or other autoimmunity. There's no private message function but I'll post my email on my profile. I always worry that I'll put some identifying information online and that my employer or someone outside of my very small family circle may find it. If you don't mind answering, how do you manage your HSV? Was transverse myelitis your initial HSV presentation? Did you ever have HSV meningitis or Mollaret's? I'm trying to find a doctor or team of doctors (at least ID and neurologist, and hopefully someone who specializes in HSV) who have treated people with this type of HSV presentation. It's been very difficult in my area. Do you have a recommendation?

I have had extensive immune workups and nothing really stands out except for a history of elevated ANA titers that occurred almost 10 years prior to HSV exposure. These eventually resolved without treatment and repeat workups since acquiring HSV have so far been negative except for chronic lymphocytosis. Some years ago before I had HSV problems, my CD4 and CD8 counts were low, but nothing to explain why. I have no other identifiable factors to explain this.

Redwings, thanks for alerting me to the ON trial. I wasn't aware of it. I've had ocular HSV but not ON. It's very disheartening to know that MS may still present 10 years later. And I was also hoping that negative scans could rule out MS forever or at least indefinitely. You read my mind about the clock. I suppose each HSV meningitis does reset it because I lose more function each time. This is so frustrating and horrifying. Throwing more drugs at higher doses is a temporary bandaid at best.

My theory is my immune system is not suppressed or weak: in fact, it seems strong enough to mount a response. But it appears to be completely misdirected and hyper-inflammatory. My response to high dose steroids and antivirals (and now, COX-2 inhibitor) tends to support this.

I appreciate everyone's thoughts and suggestions.

[tweezer]

Yes, I have also had cervical and thoracic spine MRI scans, though not as frequently as the brain MRI scans and not for at least 18 months. I suppose it is a good idea to repeat these tests as instructed particularly as I've fluctuated from barely functioning to semi-functioning since early June. I don't understand why I recovered fairly well from the first meningitis but not now?

Has there been resolution on whether a 1.5T is strong enough to pick up even very small lesions or whether a 3T is more appropriate?

Also, I've read both that (1) a regular MRI scan without contrast will pick up any MS lesions are there and that contrast isn't necessary except to show old v. new lesion(s), and that (2) and that some people have initial clear MRI scans but were diagnosed based on the contrast portion. Which is correct?

Answers to these questions would really help me plan my course of action. Because my kidney function requires regular monitoring, and I'm allergic to gadolinium (hives, throat swelling) and need pre-treatment every time, I'd like to avoid it though not at the expense of useful information.

It's been awhile since I researched anything new about MS. Thanks.

[tweezer]

Sorry for the typos.

I meant I have not had spinal imaging for 11 (not 18) months. I think I had the cervical spine imaged last fall but I'd have to check my records. I was told it was ok.

Has anyone heard of treatment with Copaxone for neurological deficits without a MS diagnosis? Are MS drugs ever prescribed "off label?" I intend to ask about this at my next appointment. I didn't want to go there but I'm already doing everything I can and still losing function. I don't want to think there's something more I could have done.

[Redwings]

Thanks to everyone who fleshed out why tweezer’s case is so complicated. It was too much for me to include in my last post.

Since that’s been done, I’d like to pick up a couple of points. The first I alluded to, and I’m going to expand on it now because it’s important to the other point.

tweezer, what I’m sensing between the lines of your posts is that your attention to MS doesn’t align with your history or perhaps your interpretation of it. There doesn't seem to be much justification for how much attention you're giving MS.

You’ve probably been over a lot of this with your doctors already. But, for completeness, I’m going to go through it in case anything has been left out of those discussions. This is all important because, if you’re going to venture out into fringe thinking without falling over the edge, you must be fully cognizant of why you’re out there, and that reason can’t be fear and ignorance.

You already have neurological symptoms that can be tied directly to viral meningitis and myelitis (with maybe a bit of head injury thrown in). From your account, there’s no reason to believe that MS has anything at all to do with your symptoms. Yet you keep coming back to MS.

To prevent your emotions from carrying you out over the edge, you should be very clear with yourself – not me, because I don’t need to know the answers – about why your thinking is taking you in that direction when there’s no evidence for it. So ask yourself, why do you keep thinking about MS when it appears that you’re at far greater risk of neurological decline due to poorly controlled viral infection?

Of all of the autoimmune diseases that a virus can be the environmental trigger for, why did you pick MS? Is it because (and perhaps only because) you have neurological symptoms and MS is the only autoimmune condition you’re aware of that can cause neurological symptoms? Is it because (and perhaps only because) some people who have had viral meningitis have gone on to later develop MS?

Again, answer to yourself, not me. I admit that some of these questions are setups, to help you clarify your thinking. This is about you, not me, and you’re the one who needs to make rational decisions. (I’m having enough trouble of my own, thank you. ) I’m posing the hard questions because the quality of your answers is only as good as the quality of your questions.

The only logical link that I can think of between your recurrent episodes of viral neurological infection/inflammation and MS is that viruses are recognized as being among the environmental triggers for autoimmune conditions in people who are genetically susceptible. But there’s a difference between “viruses are recognized as an environmental trigger for autoimmune conditions” and “I’ve had a virus that might trigger an autoimmune condition like MS” and “I’ve had a viral infection that will probably lead to MS so I need to be vigilant for MS and try to prevent neurological decline due to MS.” The last one isn’t entirely logical.

The possibility that a viral infection might trigger MS is one thing. Looking for ways to minimize neurological damage and promote neuroprotection is something else entirely. It isn’t clear from your posts that you’re aware of the difference. What tells me that is that your idea of a neuroprotective medication is an MS medication and only an MS medication.

With all of that being said, we’re ready to venture out into the fringe.

There are no off-label uses of MS-specific meds that come up in a search of the medical literature. Copaxone is in clinical trials for uses other than MS. But it’s important to note two things about that: 1) the information for those trials hasn’t been updated in at least two years, and 2) the conditions Copaxone is being tested for do NOT include damage from infections, viral or otherwise. That means that none of the testing involves neuroprotection in cases of viral damage, and that there’s no reason to think that Copaxone is indicated for use as a neuroprotective agent for the condition and damage you have.

There’s an exception to what I’m going to say next that applies to you. I’m reasonably sure that your doctors have gone over this with you, but I’m going to cover the basics to clarify how we get to the exception.

Corticosteroids suppress inflammation. But in doing so, they also suppress the body’s ability to fight infection. For that reason, it’s a medial tenet that steroids aren’t used without some kind of anti-infective drug. In the case of a viral infection, that means that an antiviral drug would be used along with a steroid. What makes steroids risky for you is that you haven’t had a good response to the antiviral meds. Steroids could possibly allow a virus to proliferate unchecked. The dilemma is that inflammation has to also be controlled, which puts you into a contradictory situation. Damned of you do and damned if you don’t.

The exception would be anti-inflammatory agents that don’t suppress the immune system. While the exact mechanism of Copaxone isn’t well understood, it’s believed that Copaxone has an anti-inflammatory quality. So it’s possible – in theory – that Copaxone might be beneficial for you because it might act as an anti-inflammatory that might help to be neuroprotective without being immunosuppressive, which then wouldn’t put you at increased risk of a viral outbreak that could lead to further neurological compromise.

That’s completely theoretical. But if you could find a doctor who would be willing to prescribe Copaxone for you, there’s a theoretical chance that it might be beneficial, and it might ease your mind that you would be doing something to help protect your neurological function rather than doing nothing. But it bears repeating that this has nothing whatsoever to do with MS. There is no known way to prevent MS, and it isn’t realistic to think that you can preserve your neurological function by using Copaxone with an eye toward preventing MS. Even if you don't think that that's what you're saying, your connection of MS, an MS drug and the prevention of neurological decline implies that that's what you're thinking.

You asked whether Copaxone could help with “neurological deficits without an MS diagnosis." First, “neurological deficits” is too vague a term to address. Second, an MS diagnosis isn't the determiner of whether Copaxone will or won't be effective in helping with neurological deficits. A lot of people with MS get no benefit from Copaxone. And third – again, answer to yourself – is MS is the only cause of neurological deficits that you think you need to be concerned about, and if so, why?

Remember that in MS, the primary function of Copaxone is to act as a sort of decoy for myelin. Viral infection isn't a demyelinating condition for which that property would be effective.

You can explore with your doctors whether any other anti-inflammatory drugs might be beneficial. It bears repeating that Copaxone isn’t known to be a better anti-inflammatory than other drugs, and might not even be as good as other drugs. A downside to nonsteroidal anti-inflammatories is that they can be toxic to the kidneys. Another damned if you do and damned if you don't.

You might also want to consider adopting an anti-inflammatory lifestyle.

If there’s anyone who could benefit from the high-level multidisciplinary expertise of a Mayo Clinic, Johns Hopkins or Cleveland Clinic, it’s you. It may not matter what you learn from anyone else’s individual experience if your doctors aren’t capable of managing your case. It sounds like you have justification for petitioning your medical insurer for an out-of-network referral to a high-level specialist or clinic. If that doesn’t happen, what’s left is to ask yourself what you’re willing to do to get there on your own. Where there’s a will, there’s a way.

Caution: Not proofread before posting.

[SNOOPY]

Are MS drugs ever prescribed "off label?" I intend to ask about this at my next appointment. I didn't want to go there but I'm already doing everything I can and still losing function. I don't want to think there's something more I could have done.

No.

The Disease Modifying Drugs (DMDs), such as Copaxone, are not and have never been used 'off label'. If you are diagnosed with Clinically Isolated Syndrome(CIS) your doctor can prescribe one of the DMDs.

CIS means your doctor feels it is more likely than not that you have had your first neurological event and more likely than not wil go on to a definite diagnosis of MS.

I didn't want to go there but I'm already doing everything I can and still losing function. I don't want to think there's something more I could have done.

The DMDs, if you have MS, may or may not help. The treatments for MS give no guarantee of improving or keeping the patient from losing more function. If someone takes a DMD they are hoping they help.

There is no cure for this disease.

[Special Kay]

I support Redwings post stressing that MS is probably not a likely diagnosis for you.

To answer your questions to me, I control my HSV with 500 mg of Famvir, twice a day. This is the "immuno-compromised" dose, which I was put on when I started taking Avonex. Sometimes I skip a dose with no problems. My kidney function has been fine.

My acute HSV infection began in August 2006 and my first neurological symptoms following within one or two weeks of infection, most notably neurogenic bladder and lower limb parasthesia. I was not put on steroids, despite the symptoms, because of the fear that it would allow the virus to advance. Anyway, after a few hair-raising weeks, Valtrex did its thing.

By the next month, I had developed a unilateral leg weakness and clonus. Most docs at this point thought I was just "working through" the HSV infection, not resting enough (they love telling runners to stop running), and would resolve on its own. But my gait problems continued.

Roughly in February, I had an MRI, which showed C-spine and brain lesions. The next month, I had an LP, which showed O-bands. It took me some weeks to land with an MS specialist, but within a couple months I had a diagnosis of CIS and started Avonex that summer, about a year after catching HSV.

I agree that you need some high-powered docs looking at your case. It almost seems as if you might have some immune disorder that is either very rare or unnamed.

[lusciousleaves]

If your ID specialist is truly stumped, might he/she consider referring you to the NIH Office of Rare Disease Research? I can appreciate your attempts to keep looking, especially in light of the recent decline. This is the place I would ask to go if in your shoes. In fact, I would try at least one of the big specialty clinics Redwings mentioned along with application to the NIH research office.

http://rarediseases.info.nih.gov/Res...aspx?PageID=31

[Cat Mom]

Wow, this is incredibly fascinating! If you added up all my neuro reports for the entire 7 years I've had MS, it wouldn't amount to half as much detail as this.

I know this is a complicated issue but... way to go MS World! Redwings, thanks for sharing your knowledge, I always enjoy reading your posts even if the don't apply to me.
Jen

[tweezer]

Thanks again to everyone who offered ideas.

I did go to my follow up and had repeat scans on a 3T MRI machine at a Mayo clinic. I'm told they were fine. I did not have contrast because I'm taking drugs at a dosage that requires kidney function monitoring. I trust that the 3T results are reliable without contrast.

So, I actually have sought treatment at Mayo but it was actually their ID specialist who told me to stop antivirals to see if I could culture a positive lesion. I really did not understand the purpose of this because I already had multiple positive IgG tests, my symptoms were consistent with uncontrolled HSV infection, I was not told how a positive culture would impact or alter the management of my condition, I was not given any other explanation for my symptoms, though he dismissed them as HSV-related, and I repeatedly told him that I do not normally get lesions and the rare times that I do, they are the least of my problems and do not bother me at all, especially compared to the host of neurological and systemic problems I DO have. He seemed unwilling to discuss this further so I followed his instructions. And when I did, a few weeks later I developed meningitis for the first time. I have never gotten back to how I felt before meningitis and I guess as long as there are no new therapies, I never will.

I had a relatively good day during my follow up. Then a week later, I lost control of my bowels. I've heard and read of HSV urinary retention and, rarely, urinary incontinence with myelitis but not bowel incontinence. I don't mean a little incontinent or a little leaking. My digestive system was in complete spasm and I literally had no control over the floodgates and was so weak and in so much pain that I could not even sit and had to lie on the bathroom floor and let my body do its thing. Now I'm terrified to eat or be more than a few steps from the bathroom.

I'm certain HSV has wreaked havoc with my autonomic nervous system. In addition to the ANS controlled digestive system, about a year ago, as I was starting to recover from HSV meningitis, I developed a cardiac condition called premature ventricular contractions. I was 31 at the time and in good physical condition (other than HSV, obviously) with no cardiac risk factors or family history.

I'm looking into getting established with another ID doctor who has a broader scope of practice (beyond HIV and hepatitis) in hopes that he can work with a good neurologist who has actually seen HSV present this way. Hopefully, these doctors can refer me to the NIH center that lusciousleaves brought my attention to. My HSV issues overlap so many body systems because the nervous system innervates and controls everything. This explains why, for example, multiple digestive evaluations have failed to yield any diagnosis to explain my problems like dysphagia and incontinence. It all points back to the nervous system dysfunction.

Thanks again. I hope you don't mind my checking in from time to time because my problems are definitely neurological and I've gotten a few ideas from these boards.