This Is MS Multiple Sclerosis Knowledge & Support Community

Hi, everyone. I'm here due to unfortunate circumstances of which I am sure you are all intimately familiar.

I'll get right to the situation at hand, regarding which I would love the input of experienced people. I will try to be detailed so pardon if this gets long winded. I'll summarize first so you don't have to pour through the novel bellow if you don't want.

TL;DR - Wife has partially blurred vision in right eye, mild tingle in foot. Passed neurologist's physical incredibly well; no pain, no imbalance, no weakness, etc. (except for aforementioned issues) He suggested complicated migraine, pretty positive about situation overall. Foot tingle considered to be most likely related to earlier ankle roll and subsequent swelling. Suggested MRI and Carotid Doppler just in case. Suddenly after MRI, incredibly aggressive push toward MS diagnosis. Over the course of about four days, suddenly everyone is acting like MS is basically a foregone conclusion and my wife is under a sudden battery of hospitalization, tests, and treatments. All the while, wife is basically doing great besides the blurry vision. Suddenly, blood thinner has randomly been introduced into the bunch? Does this add up?


---The long version---


Just under a week ago, my wife went to bed after a powerful headache struck. She described it as "behind her eye." At the time we thought nothing of it; I've had headaches centered there before, my mother is plagued by constant migraines and also frequently describes them in such a way, it didn't seem strange to either of us. The following morning she awoke with partially blurry vision in her right eye, which stuck around for about three days when we decided to take her to an opthamologist to have it checked out.

The opthamologist found nothing wrong with her eye. We also mentioned that there was a lingering tingle in her right foot. We had not mentioned this before because we were convinced that it was related to a rolled ankle that my wife had experienced not long before hand. She had rolled her ankle slightly, it became swollen and a little numb afterwards...strikingly common result from a rolled ankle, we thought. The opthamologist immediately proposed MS and referred us to a neurologist.

We got in to see the neurologist the very next day by a stroke of great fortune (Thank the Lord) and he performed a physical examination on her. She passed the examination so well that the neurologist seemed very unconvinced about it being MS related. He suggested that, based on the exam, we reall not worry about MS just yet and that it was most likely a "complicated migraine." He let us leave, but made sure to send us away for an MRI and a carotid doppler just in case. We felt pretty great at this point. A little research into complicated migraines definitely seemed to fit the bill. We did the MRI the same day we left the neurologist and called it a day.

The following morning we received a very early phone call from the neurologist. I save some time by sparing the details of this day, but the neurologist suddenly seemed VERY concerned about MS, mentioned appearance of lesions on her MRI, and urged us to immediately get admitted into the hospital. We did so and have been in the hospital ever since. My wife has been under a battery of different tests. Blood tests of all kinds, IV steroids, more MRI scans, lumbar puncture, calling in "the big guns" and "the real pros" from Stanford, the works. Despite the great stress and fear, she has taken it all like a champ and has been in pretty good spirits during the entire ordeal, considering the severity of it all.

The neurologist also appeared on site and told me that he "has very little doubt that it is not MS." I can't explain to you how much of a 180 this comes off from him from our first visit to his office, where he practically seemed to brush MS completely off the table save for what, at the time, seemed to be a distant precaution in the form of MRI scan.

Of course, all the while I've been madly researching MS between trying to make sure all goes as smooth as I can manage for my wife. I've crammed as much info and anecdotal experiences into the past three or so days that I can. However, some elements of this don't seem to be adding up to me.

Everything I've read suggests that an MS diagnosis only tends to come after long periods of time. I've read claims that two attacks are required before officially
diagnosing a patient with MS, claims that it can take months to years even. In our experience, however, it seems to be taking only a matter of days. Additionally, my wife seems to be feeling INCREDIBLY well despite how definitively our neurologist is proposing MS. She has been completely without pain besides the bad headache she went to bed with at the beginning of this all. In fact, the only pain she's felt at all is from all the syringes she's dealing with. No balances issues whatsoever during any of the multiple exams she's been through (even the original rolling of her ankle was very minor trip, while wearing healed shoes...didn't hit the floor or anything.) No loss of strength. The second MRI (spinal) went very well and they found no lesions or swelling.

Besides the partially blurred vision and a tingle in some of her toes when touched (which is reportedly greatly improved as of today) my wife seems to be doing great.

The final nail on the head came when the nurse appeared tonight and did what has become a seemingly hourly routine...some needles and a check up. This time, however, she produced a syringe we had not seen before and went for my wife's abdomen. We became very confused because this had not happened previously and pressed her on what this shot was about. She explained that it was a blood thinner for avoiding blood clots and was supposed to have been being given to my wife all along. This confused us and we denied the shot, deciding to ask the doctor about it tomorrow.

This got me confused. Besides the precautionary carotid doppler scan (which never happened because of the sudden persistence on MS and hospitalization) there has been no discussion of blood clotting worries thus far. Some brief research into the relationship between clotting and MS didn't turn up anything too interesting except for Hughe's Syndrome (APS,) which actually sounds like a reasonable alternative. But of course, what do I know?

Does anyone else have any input on this? I'm not entirely sure how to navigate the situation. Is it common to have such an aggressive, fast push toward MS diagnosis with such a (relatively, compared to things I've read) good feeling patient? The "feeling" I've gotten from the situation is that it's considered a foregone conclusion at this point. My wife has gone through enough already that I'd hate to add the stress of dealing with heavy medication aimed at the wrong problems. I guess I should stop now before this writing gets any more out of hand...

Any input, guys?

Also, God bless you all. Over the past four or five days I've gotten a brief glimpse into the stress, confusion, and agony many (all?) of you have dealt with here.

I would try a holistic doctor to find out the cause of the symptoms. Dr. Hyman feels the name of the disease is unimportant and you need to find out what is causing the symptoms. Most important in healing any disease is the diet you chose. Fooling around with these doctors and their drugs can be very dangerous.





http://www.healingdaily.com/Doctors-Are ... the-US.htm

Hey, thanks for getting back to us.

I agree with you about the importance of diet on overall health. It's something my wife and I got involved with about half a year ago (independent of our current crisis) cutting sugars, heavy starches, etc from our diet. Over that half a year general health improvements and weight all improved substantially for us. When I get a longer chance, I'll check out the links you just sent in more detail. Appreciated =)

Welcome to ThisIsMS, Netbe. As asked, here is my input. I offer you my standard action plan recommendation:

First, your wife may not have MS at all; her diagnosis does seem to have been made quickly, but it is entirely possible that the diagnosis is correct. In general, it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. I had "normal" test results initially (my first THREE MRIs showed no evidence of MS). IF she does have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I hope that she has a good GP or internist, that he is compassionate and enjoys being a "disease detective." I am not sure that a specialist, a neurologist, is necessary right at the beginning of an MS investigation, but since she has "pros" from Stanford, she is in good hands. However, I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. Start at the beginning with her symptoms list and with a thorough physical baseline examination (which it seems she has had) including blood tests for her cortisol level (elevated with stress and causing blood sugar to rise), glucose AND insulin levels (these are two DIFFERENT tests – of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests; I suspect that her level is above the optimal 3 UU/ML, if she does indeed have MS; insulin is known as "the fat storage hormone" – a body cannot make fat without insulin), thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies) – many diagnosed with MS are later found to have a thyroid problem instead. Ask for a copy of all her test results for your own file. Since I suspect insulin involvement and resulting insulin resistance in skeletal muscles are responsible for MS symptoms. I believe the burning sensation in my feet and legs is actually due to caustic insulin damaging the inside of my blood vessels (and not initially the nerves).

As for the IV steroids prescribed for her, Solu-Medrol is a glucocorticosteroid which is often prescribed for MS symptoms; I know it elevates blood sugar and temporarily engages or occupies the insulin, reducing the amount of both in the bloodstream. In my opinion, this is the mechanism that explains MS symptom improvement with Solu-Medrol. During this time the pancreas MAY reset to secrete a proper amount – adequate to handle glucose, but not in an excess amount. (Solu-Medrol has not been effective for me. My pancreas chronically secretes TOO MUCH insulin.)

Cortisol also elevates blood sugar and the body produces more insulin in response. In her case it may be that her elevated levels of cortisol are prompting the pancreas to overproduce insulin.

By the way, excess insulin promotes blood clotting… reason for the blood thinner? Blood thinners were frequently prescribed for MS back in the 1950s.

I think this imbalance of the hormone insulin causes other hormone imbalances – possibly thyroid hormones. Brittle or thinning hair (hair loss) is one of the signs of a problem in the thyroid gland (underactive thyroid a.k.a. hypothyroidism). Other symptoms can include feeling tired (unrelenting fatigue), cold all the time, memory loss, brittle nails, leg swelling, constipation, loss of the outer third of eyebrows, difficulty losing weight because of slow metabolism. Could this be a possibility for your wife? A simple home test can also indicate underactive thyroid: if she takes her basal body temperature (in the morning before getting out of bed) every morning for a week and it is consistently below 98°, she may have an underactive thyroid. I recently came across the following information: "Many medications also slow down the thyroid and also cause iodine deficiency. Lithium and corticosteroids [Solu-Medrol and prednisone] are thyroid-slowing and should be used sparingly if at all."

Third, if you like to read and if she does have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, since I believe insulin is a major player, I am glad to hear you are focused on diet and I encourage you both to continue to eat a healthy diet (a good idea whether or not a person has MS) –cutting sugars and starches is a great place to start; a diet that will not trigger insulin production is best, in my opinion. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin secretion, too.), remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. My suspicion is that Fatty Liver Disease is also involved with MS, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you.

Hey Lyndacarol, thanks for the all the info. Greatly appreciated!

To be a bit more specific about our dietary situation, my wife and I have been eating according to LCHF/Keto standards. I did a pretty extensive look into the insulin response and the disorders it can cause when things get out of hand over the course of our initial dietary changes. The clear cut improvements in our health during the time we've spent eating to properly manage insulin response makes it pretty easy for me to believe it could also be involved with a variety of chronic diseases, including MS. I'll definitely look into your other post and the other resources you mentioned.

Netbe,

If it was at all funny, I'd say we're looking at an apparent comedy of errors. Several things about your story strike me as strange and other parts just worth commenting on:

* If the ophth didn't find anything wrong with her eye(s), there was absolutely no reason to jump to a suspicion of MS (that would have required a finding of Optic Neuritis to make sense).

* A single MRI can show sufficient clinical signs appropriate to a diagnosis of MS (and could have been enough to change neuro's mind), but does need to backed up with elimination of 'similars.'

* The thing I find completely mystifying is why your wife ended up in the hospital. "Suspicion of MS" is not life-threatening! Who admitted her? For what reason? One doesn't need to be admitted for any of the tests you've mentioned.

* Even if she has MS, IV steroids should have been discussed with her before starting them. There are definitely negative effects and risks, and steroids do no more than shorten the duration of symptoms, anyway.

* Nearly instantaneous diagnoses are not really rare (but usually happen to people who have histories of symptoms prior to whatever sent them to a neuro).

* The blood thinner episode might have something to do with the steroids, but it and the fact your wife was admitted and supposed to have a doppler makes me wonder if someone there thought/thinks she had a stroke. Is it possible that all her care decisions are not being managed by a single doctor?

It just so happens that I go to the Stanford MS Clinic and I saw another doc in their Neuro Dept. for a mild stroke last year, so I'm definitely curious how all this is going to turn out.

Whatever happens, your wife should not be a passive patient. She should insist that both of you participate in any decisions about care.

Best of luck to both of you...

Hey Mark, thanks for piping in! I'll make some responses in order to try and clarify.


1)

* If the ophth didn't find anything wrong with her eye(s), there was absolutely no reason to jump to a suspicion of MS (that would have required a finding of Optic Neuritis to make sense).

As far as I know, the Opthamologist found "nothing physically wrong with her eye." I suppose he may have noticed that the optic nerve seemed swollen? Is it even possible to notice such a thing by shining a light through the eye or other typical "looking at a person" type of eye exams?

2)

* A single MRI can show sufficient clinical signs appropriate to a diagnosis of MS (and could have been enough to change neuro's mind), but does need to backed up with elimination of 'similars.'

Everything I've read so far implies that at least two MRIs are necessary to diagnose someone with MS, or at least two attacks with a certain amount of time between them. I'll go try to find some info on people getting diagnosed really fast with only on MRI and no history. Do you know of any off hand?

As far as ruling out similars, I'm not really sure what they're doing in that department. I know they've taken a variety of blood tests and an assortment of other things, but I can't really get answers about their ultimate purpose from the nurses administering most of them. I'll have to grill the neuro whenever he comes around again.

3)

* The thing I find completely mystifying is why your wife ended up in the hospital. "Suspicion of MS" is not life-threatening! Who admitted her? For what reason? One doesn't need to be admitted for any of the tests you've mentioned.

When this all began to speed up on the morning of day three, the neuro was extremely insistent that we get her treated immediately. After some questioning, it was explained that there was an inpatient option and an outpatient option. The latter of which still involved multiple trips to the hospital, what I believe is an orally taken steroid of some kind, and is understood to be less effective than the direct IV steroid treatment, which would require admittance into a hospital room for some time. If something was wrong I wanted my wife to start getting help immediately, so we went for it.

4)

* Even if she has MS, IV steroids should have been discussed with her before starting them. There are definitely negative effects and risks, and steroids do no more than shorten the duration of symptoms, anyway

They were briefly discussed. I stress briefly, because as you've heard, this is all happening extremely quickly. Supposedly they are supposed to potentially make her irritable and cause some issues sleeping. She seems to have experienced a little of both. Her normally sweet nature has made the first issue extremely minor and the second was fixed with some ambien. She more or less didn't sleep at all the previous night, but got tons of it over the last night, much to my relief.

5)

* Nearly instantaneous diagnoses are not really rare (but usually happen to people who have histories of symptoms prior to whatever sent them to a neuro).

Yeah, this is one of the things that really gets me. I did some quick looking into examples of super fast MS diagnoses and invariably the individual mentioned a history of experiencing symptoms in the past. In all the years I've known her, she has not experienced anything that alerted us to this sort of issue. In fact, she rarely ever gets sick in general.

6)

* The blood thinner episode might have something to do with the steroids, but it and the fact your wife was admitted and supposed to have a doppler makes me wonder if someone there thought/thinks she had a stroke. Is it possible that all her care decisions are not being managed by a single doctor?

We probed a little more about the blood thinner. Supposedly, this was supposed to be used as insurance against clotting in patience who were confined to their bed most of the time. Because my wife can get around fine (other than the inconvenience of being hooked to an IV) we have opted out of getting this shot. Regarding the management issue, I sure hope not. As I currently understand the situation, this is all being organized and instructed by the neurologist, who is supposed to be receiving test results and interfacing with Stanford on the matter. We have, however, been visited by a couple of other doctors (GPs, and a couple specialists for specific tests, if I'm not mistaken) who have been addressing concerns regarding the events that have been happening since we were admitted. They seem unaware of specific details regarding the mysterious first MRI, but all the results that they have seen from the tests being administered so far been pretty positive on the whole.

This makes me really want to know more about the first MRI.

It just so happens that I go to the Stanford MS Clinic and I saw another doc in their Neuro Dept. for a mild stroke last year, so I'm definitely curious how all this is going to turn out.

Whatever happens, your wife should not be a passive patient. She should insist that both of you participate in any decisions about care.

Best of luck to both of you...

Thanks so much, we really appreciate you taking the time out of your day to comment on this ordeal at all. I will definitely attempt to get some questions answered at the soonest opportunity. Although I loathe the idea of subjecting my wife to any more needles, pokes, or jabs of any kind, I would feel much better if I knew alternatives were being tested for as well.

I'm very sorry to hear about your issue with a stroke, my uncle got hit by a pretty bad one maybe two years ago now and it was a very scary time. Friends and strangers alike have pressed on me about how highly regarded Stanford is on neurological issues, so it sounds like you were in great hands at least.

Hope all is going well, God bless!

Aha -- more details always help...

Optic Neuritis (ON) is the one eye condition that is closely associated with MS and ophthalmologists are the docs most qualified to find it. I haven't had ON, so I don't know what kind of exam is necessary.

While the official criteria specify two 'attacks' (as evidenced by MRIs) separated in space and time, most seem to assume that lesions in widely separated locations will have happened at different times. But you are correct: this is usually backed up by patient history before calling it MS.

The neuro really should have told her about all the tests and meds beforehand, both the why and the what.

I don't know your geographical situation but I'm pretty sure just about everyone does IV steroids on an outpatient basis (except perhaps for those who enter via the ER). It doesn't even take two hours. I've never done IV steroids, but I wouldn't bother for a non-disabling condition.

That sounds reasonable about the blood thinner...

You say your neuro is "interfacing with Stanford" -- does that mean (a) your neuro is not affiliated with Stanford and (b) Stanford Hospital is her current residence? If that's the case, consider asking for a second opinion from the Stanford Neuro Dept./MS Clinic (especially if Stanford is relatively local for you).

I initially saw an 'independent' MS neuro, but switched to Stanford after they confirmed my dx. My insurance covers them the same, and I've had prior experience with Stanford Neuro (brain tumor in the 90s)...

Netbe wrote: Everything I've read so far implies that at least two MRIs are necessary to diagnose someone with MS, or at least two attacks with a certain amount of time between them. I'll go try to find some info on people getting diagnosed really fast with only on MRI and no history. Do you know of any off hand?

This makes me really want to know more about the first MRI.

Hi Netbe & welcome, although I'm sorry you and your wife are going through all this! I just wrote a lo-o-o-ong reply (undoubtedly one that would have been considered one of the most brilliant, intelligent & informative posts ever to grace these forums ), but, sadly, it disappeared into cyberspace immediately after I hit "submit." That hasn't happened to me for so long that I was lax in copying it before I hit the button.

So... now you're only going to get the short version (I may have more to say later):

1. I'm one who was diagnosed with almost 100% positive MS by a physiatrist the day after the first MRI of my brain & C-spine (with no contrast) when I was feeling healthier than I had in years. I tell it all the time, so here's a link to a thread with the story and my MRIs:
http://www.thisisms.com/forum/general-d ... 16335.html

He got clues from my reflexes and a simple neuro exam, when my only complaint was a slight tremor in one finger.

2. Your wife's doctors should have been much more forthcoming in their explanations, but you should be able to find out whether the first MRIs showed that they're investigating more than MS. I've spent the last few months making my way through a maze of doctors, tests, and new non-MS diagnoses, and I've been able to get copies of everything within a day or so - bloodwork, CDS of MRIs, CT scans, PET scan, X-rays, and the reports that go with them. I found out the results of my scans before I saw my docs, although they added their own impressions and explanations of how they fit into my overall health.

3. Sadly, there are no absolute "facts" about MS and its diagnosis. There are guidelines, but every single one of us is unique in the way MS manifests itself. in our symptoms, our diagnosis, our history. And although I've been told I have one of the most positive diagnoses that my docs have seen and I pass every test, there's no way to be 100% positive of that.

4. I agree with a whole lot of what Mark said (as usual).

Best of luck to you and keep asking questions.