Unexpected medical adventure

[yennyfire]

I'm sorry that you're so uncomfortable TP! Would some warmth be comforting? I have back issues (heading towards surgery) and I have a flannel bag full of rice that I microwave for a minute and it helps. Because the rice is malleable, it shapes itself however I need it to. If you're interested, I can find a link to one for you (or make it myself if we can figure out how I can get your mailing address)...sending hugs and hope that you can get comfortable enough to get a good night's sleep...

ETA...here's a link to one in case it's something you might want:

https://www.amazon.com/gp/aw/d/B00T...crowavable&dpPl=1&dpID=51llSI7DFBL&ref=plSrch

 

[ksinger]

Yes, thanks for the update TP. I was wondering how you were doing, especially how your eye was progressing. It sounds like the steroids are doing their thing. I'm sorry you're in so much pain though. As for the pillows? Hahahaha! My bed looks like the Sta-Puffed Marshamallow Man died on my side of the bed. It's pitiful.

As for the not being able to use the LP results to push you towards a MS diagnosis, unfortunately for you, it won't really push you away either. You have entered the MS twilight zone, aka limbo. It's a world of little more than probabilities and how you navigate your options is going to be something of a challenge.

And if the time comes when you want a LOT of information, or need first-hand info from a non-medical standpoint, I can point you to some solid stuff.

My advice? No matter what they tell you? Get on with your life and don't fret. You may not even be the fretting type, but there really is nothing you can do to avoid MS if that's what it is. If it is, you'll know in time, and if not, there's no point in wasting time worrying.

I'm going to exit now (mostly, I'll keep on "eye" on you ), happy that you're getting better, and wishing you the absolute best going forward.

 

[TooPatient]

I'm sorry that you're so uncomfortable TP! Would some warmth be comforting? I have back issues (heading towards surgery) and I have a flannel bag full of rice that I microwave for a minute and it helps. Because the rice is malleable, it shapes itself however I need it to. If you're interested, I can find a link to one for you (or make it myself if we can figure out how I can get your mailing address)...sending hugs and hope that you can get comfortable enough to get a good night's sleep...

ETA...here's a link to one in case it's something you might want:

https://www.amazon.com/gp/aw/d/B00T...crowavable&dpPl=1&dpID=51llSI7DFBL&ref=plSrch

I've been using gentle heat on and off. Love the rice bags! It does help some. Getting fewer muscle pains as the day goes on.

 

[TooPatient]

Yes, thanks for the update TP. I was wondering how you were doing, especially how your eye was progressing. It sounds like the steroids are doing their thing. I'm sorry you're in so much pain though. As for the pillows? Hahahaha! My bed looks like the Sta-Puffed Marshamallow Man died on my side of the bed. It's pitiful.

As for the not being able to use the LP results to push you towards a MS diagnosis, unfortunately for you, it won't really push you away either. You have entered the MS twilight zone, aka limbo. It's a world of little more than probabilities and how you navigate your options is going to be something of a challenge.

And if the time comes when you want a LOT of information, or need first-hand info from a non-medical standpoint, I can point you to some solid stuff.

My advice? No matter what they tell you? Get on with your life and don't fret. You may not even be the fretting type, but there really is nothing you can do to avoid MS if that's what it is. If it is, you'll know in time, and if not, there's no point in wasting time worrying.

I'm going to exit now (mostly, I'll keep on "eye" on you ), happy that you're getting better, and wishing you the absolute best going forward.

Thank you! It definitely feels like limbo. I'd happily stay in limbo forever rather than have an official diagnosis.

I'd love any advice and non medical experience and whatever else you can point me at. The MS clinic is sure to be one of the best around, but I would love to LIVE rather than be just a medical chart. The doctors were all anxious to cut into my head as fast as possible so knowing as much as possible going in would be good. (Thankfully a good neurologist talked sense into the neurosurgery team... They had an OR reserved for the day after I was admitted!)

I'm asking my Dr for reference to someone to help me get into healthy diet and exercise. Already pretty good on diet, but want help and monitoring on the exercise to make sure I am healthy about it. I have some concerns about my heart so want to be cautious.

(I don't know where to start asking questions so feel free to share anything you think would help. I want to know what I can and do what I can so I can forget the whole thing (as much as possible) and get back to living.)

 

[ksinger]

Well, hopefully your experience of dodging the unnecessary surgery bullet, has made you understand the first rule of dealing with the medical community, specifically surgeons: surgeons, by nature of what they do, tend to fixate on surgery as THE way to fix things, or find things out. And at times that may be true, but seriously, a bunch of neurosurgeons can't see a classic presentation of MS, and are all hot to cut instead? The second rule is that, unless you are in imminent danger, every surgery should be resisted for at least 3 days. There is very little that can not be put off for at least 3 days. This gives YOU time to get your own head straight about whether you really need it, to forumlate questions you want answered before you consent to the surgery, and for any irrational exuberance on the part of the over-eager-beaver surgeon(s), to dissapate. The third rule, is you CAN refuse most surgeries. You are not a supplicant or child and they are not gods. MAKE them sell you on surgery, demand the cost-benefit analysis, and what benefits YOU get to justify a hole drilled in your head.

The 3 day rule was great advice given to me by my own mother when I was 30 and they wanted to do an excisional biopsy on my breast because the ultrasound found nothing. (Yes, ponder that for a moment) I was freaking out at the prospect, and she said "Take a breath and do nothing for 3 days - make no choices, just do nothing. Straighten out your head." I did, then got in quickly to a doc who was a noted diagnostician, and still there was nothing wrong. I avoided the knife and learned a good lesson that has stood me in good stead ever since. Now it's yours.

OK, all that said...here's what you can reasonably expect from the MS center....

First, MS is one of THE most complex and mysterious diseases out there, what they don't understand FAR FAR outstrips what they do understand. And it is STILL is a clinical diagnosis. That means that it's about signs and symptoms and history. In spite of all the fancy and unpleasant tests you had, there are no tests that rule it in or out. The tests add to the overall picture, they don't create the whole thing. Right now, your picture is not quite in focus.

So, If they haven't definitely ascribed your symptoms to something else, and it seems at this point that they have not, then MS is still on the table. Where it gets dicey in your case, is whether they offer you, or push you, to start a DMD (disease modifying medication) right now. There is some (statistical) evidence that starting a DMD early can stave off conversion to clinically definite MS, so that might be the doctors' mindset. If they do want you to start a med, then there is insurance to consider. And if insurance does say yes, then they aren't going to pay for anything but a few of the older meds, like Copaxone, because only a few of them have been approved for use with CIS. Copaxone has a great safety profile, but it's a daily injection, as are all of the other older meds they might approve. I know a lot of people in your shoes would say no to that, and that's really understandable. I probably would say no too.

Or they might want to wait and watch - do nothing and just MRI you once a year. You may not have another attack ever, though the docs will be able to tell based on the appearance and location of your lesions, if you're at a higher risk of getting MS. Or you could cruise along with no apparent issues and then have another attack fifteen years, or two years, from now. There just really is no reliable way of predicting how it will go, of how YOU will go. And the docs can't predict it either, keep that firmly in mind. What they will be rightly concerned about though, is silent damage. Often, MS brain damage IS silent - lesions are often what they call "ineloquent" - meaning they don't cause any noticeable symptoms, but the damage is accumulating. And it's not just the damage they can image with MRI, there is other damage too, that they know is there - like brain shrinkage over time (they can only see this by comparisons over time), and grey matter damage - but with current technology, it doesn't show up.

But about what you can or can't do. As soon as your eye heals up, you can do whatever you do. In fact, do it ALL with gusto and attention to the moment. Finish your degree, marry, or get unmarried, climb mountains, drink wine, whatever it is that you want to do, DO IT. There is no medical reason not to. If MS shows up to stay, then deal with it when it shows up and not one second before.
I'm kind of glad I didn't really know prior. I had mostly mild, weird symptoms for years, all attributable to other things, that in retrospect, were probably MS. But unless your function is impaired, ignorance can be bliss. But since you know a few things now that I did not back in the day, you can be aware of the types of symptoms that are likely to be neurological rather than something else, and proceed accordingly.

This is a good place to start. It is notable for being on the unicorn-y side (I'm not a unicorn fan by nature), but lots of good general info in a well-laid-out and easy-to-digest chunks. I've queued you up to the page on CIS. There really isn't much, but hey, it really is limbo.
https://www.nationalmssociety.org/W...Clinically-Isolated-Syndrome-(CIS)/Treatments

 

[AGBF]

Hi, TP-

Everyone posting here seems to know far more about MS than I do. I now nothing about it. I am very sorry for your pain and very glad that your sight is better. I am learning a little bit about MS from the constant discussion of it here. It never would have occurred to me that you might have it as it did to others because I do not know enough about it. My best friend has lupus, however. (The one in Maine with eight dogs.) And I could tell you a great deal about that mysterious disease! She has had it for many years and just a year ago one of her physicians started to question whether she actually had it! As if it's just a figment of the imagination that happens to wipe out entire sections of your body! If she didn't have the husband she does, she could never manage the dog rescues she does. She does not have the physical strength anymore. Sometimes she is in a wheelchair, although two hip replacements and a knee replacement as well several spinal surgeries have helped the arthritis that was aggravating her lupus, so usually she can walk.

She still has a lot of interaction with large dogs and wolves! Nothing seems able to stop her from doing that. She and her husband sleep with at least three of them every night. I hope when your soreness passes, you and your dogs can play, too.

Deb

 

[ksinger]

Everyone posting here seems to know far more about MS than I do. I now nothing about it.

I doubt that Deb. Most people actually know very little about it. They learn about it only when they must, like I did. Before that? We all have other things to be interested in and in this case ignorance is most assuredly bliss. Now? I'm even a mod on an MS forum.

I can tell ya one thing you can take to the bank, the face of MS is mostly NOT the slick medication ads you see on TV.

 

[sarahb]

I really have nothing to add to what ksinger so eloquently expressed. Just go about your life. If MS rears its head, treat it like you've come down with a cold. Thats my mechanism for survival: just lay low, & take care of yourself--eat correctly, & get adequate rest. Then resume where you left off when its eased. How is your vision? Hope its progressing to resolution!!

 

[TooPatient]

Hi, TP-

Everyone posting here seems to know far more about MS than I do. I now nothing about it. I am very sorry for your pain and very glad that your sight is better. I am learning a little bit about MS from the constant discussion of it here. It never would have occurred to me that you might have it as it did to others because I do not know enough about it. My best friend has lupus, however. (The one in Maine with eight dogs.) And I could tell you a great deal about that mysterious disease! She has had it for many years and just a year ago one of her physicians started to question whether she actually had it! As if it's just a figment of the imagination that happens to wipe out entire sections of your body! If she didn't have the husband she does, she could never manage the dog rescues she does. She does not have the physical strength anymore. Sometimes she is in a wheelchair, although two hip replacements and a knee replacement as well several spinal surgeries have helped the arthritis that was aggravating her lupus, so usually she can walk.

She still has a lot of interaction with large dogs and wolves! Nothing seems able to stop her from doing that. She and her husband sleep with at least three of them every night. I hope when your soreness passes, you and your dogs can play, too.

Deb

So great she is still able to take care of such energetic dogs! I definitely can't imagine ever being so sick that dog (and cat) snuggles wouldn't make me far happier.

I've spent the last week covered in a pile of cats and dogs as they all have been right next to me since I got home. Missed them so much!

 

[TooPatient]

I really have nothing to add to what ksinger so eloquently expressed. Just go about your life. If MS rears its head, treat it like you've come down with a cold. Thats my mechanism for survival: just lay low, & take care of yourself--eat correctly, & get adequate rest. Then resume where you left off when its eased. How is your vision? Hope its progressing to resolution!!

Sounds like the best plan for dealing with stuff. I'm looking forward to getting on with regular life and have been trying to do what I can that is normal.

My vision... Well, it got better for a couple of days and I was even able to read one of the titles on a book. It sat about stable for a day after that. Today and yesterday were both declining vision. I am back to not being able to see individual books in the stack and can't even tell there is print where I had been able to read that title.

The neurological opthalmologist says this is normal so I am trying to just go with things as best I can. I'm scheduled to follow up with him at the end of April but will update him as this changes. Really hoping it is "normal" and starts to improve again!

 

[sarahb]

Oh rats, was hoping to hear more positive news. I don't have any experience with vision issues beyond my own initial onset of symptoms with the double vision, which eventually went away. So I hope--with time & rest--you too, will get your vision back in that eye. It gives me hope that your opthalmologist says your experience is normal. It is extremely frustrating to have a part of you suddenly not working the way it should, hang in there TP! Sending you buckets of dust!!

 

[ksinger]

I've been thinking of you TooPatient. How are you doing? I hope your vision has been improving back to normal.

How did your appointment with the MS clinic go?

 

[TooPatient]

I've been thinking of you TooPatient. How are you doing? I hope your vision has been improving back to normal.

How did your appointment with the MS clinic go?

My vision is better but far from normal. I'm following up with the neurological opthalmologist in a couple of weeks. I am adjusting better and am able to mostly read and get by okay.

The MS clinic... Well, I am told by several people that they are the best to see. I need to call them again tomorrow. The lady who handles referrals cancelled mine for some reason. The nurse wasn't sure why. Maybe need more testing before they see me?

One of my arms has been very sore. Sort of like a burning feeling. It isn't continuous but on and off during the day. Even barely touching is painful. It feels like the pain when they were giving me the steroids. The other arm is a lot better but has some pain.

I'm also having trouble with eating. Sometimes I just am not hungry at all and other times absolutely starving. It comes out of nowhere. Foods I really like make me nauseous at the smell on occasion. Everything just tastes off.

 

[Queenie60]

Will keep you in my prayers. Take care and always thinking of you.

 

[WhitePeonia]

Always thinking of you and sending all my positive and healing thoughs.

 

[cflutist]

Continued positive thoughts for you. I was hoping that your condition would be much improved by now. Hugs to you.

 

[ksinger]

My vision is better but far from normal. I'm following up with the neurological opthalmologist in a couple of weeks. I am adjusting better and am able to mostly read and get by okay.

The MS clinic... Well, I am told by several people that they are the best to see. I need to call them again tomorrow. The lady who handles referrals cancelled mine for some reason. The nurse wasn't sure why. Maybe need more testing before they see me?

One of my arms has been very sore. Sort of like a burning feeling. It isn't continuous but on and off during the day. Even barely touching is painful. It feels like the pain when they were giving me the steroids. The other arm is a lot better but has some pain.

I'm also having trouble with eating. Sometimes I just am not hungry at all and other times absolutely starving. It comes out of nowhere. Foods I really like make me nauseous at the smell on occasion. Everything just tastes off.

Hi TP. Thanks for the update. I'm so sorry your vision isn't resolving as fast as you'd like. I hope it keeps going though.

The lady who handles referrals needs to be leaned on. The doctor is the one who decides whether you need a referral, not someone else. If there is something else that is required to get into the MS clinic, then your doctor and nurse, need to be made aware of it, not just have someone cancel because SHE decided to stop the flow of communication. Stuff like this happens all the time, and you have to be relentless. I'm dealing with one of those right now myself. It's annoying as all get out.

That said, from all that you had done, I can't think of anything that is missing. The MS clinic should not have a problem seeing you with all the testing you've had and who did it.

And in my role as straight-talker (albeit one with compassion, I like to think) paresthesias (altered sensations like tingling, numbness, etc) and dysesthesias (painful sensations like burning, lightning strike pain) are common in MS, as are changes to smell and taste. They aren't AS common as other symptoms, and they tend to get overlooked when you can't walk or you're having vision issues, but they are important.

When you get into the MS clinic you must be sure to tell the doctors about those symptoms and when they started. Don't leave this information out, because they are not inconsequential and will be part of your overall picture. And if any doc there or anywhere, brushes off symptoms such as these because they can't be "seen" on a neurological exam, or they can't find a one-to-one lesion-for-a-symptom relationship, RUN, because that doctor is an idiot. Bizarre and seemingly random symptoms like what you're describing, are often a hallmark of MS. I hate to have to say that, but it's the sad truth. I spent the better part of the year before my diagnosis, smelling an overlay of electrical burning. I could still smell stuff, but over it all? Burning. Drove me nuts. Finally went away, and I put it out of my mind. To the point that I even forgot to mention it in the upheaval of diagnosis. So mention everything. And then a few days later, request the doctor's notes to make sure he/she noted what you said. The often fail to do that.

OK, I'm taking off my mail-order stethoscope and my bossy "here's what to expect next" hat now, and just say, I'm always thinking about you and hoping for the very best for you.

 

[TooPatient]

Hi TP. Thanks for the update. I'm so sorry your vision isn't resolving as fast as you'd like. I hope it keeps going though.

The lady who handles referrals needs to be leaned on. The doctor is the one who decides whether you need a referral, not someone else. If there is something else that is required to get into the MS clinic, then your doctor and nurse, need to be made aware of it, not just have someone cancel because SHE decided to stop the flow of communication. Stuff like this happens all the time, and you have to be relentless. I'm dealing with one of those right now myself. It's annoying as all get out.

That said, from all that you had done, I can't think of anything that is missing. The MS clinic should not have a problem seeing you with all the testing you've had and who did it.

And in my role as straight-talker (albeit one with compassion, I like to think) paresthesias (altered sensations like tingling, numbness, etc) and dysesthesias (painful sensations like burning, lightning strike pain) are common in MS, as are changes to smell and taste. They aren't AS common as other symptoms, and they tend to get overlooked when you can't walk or you're having vision issues, but they are important.

When you get into the MS clinic you must be sure to tell the doctors about those symptoms and when they started. Don't leave this information out, because they are not inconsequential and will be part of your overall picture. And if any doc there or anywhere, brushes off symptoms such as these because they can't be "seen" on a neurological exam, or they can't find a one-to-one lesion-for-a-symptom relationship, RUN, because that doctor is an idiot. Bizarre and seemingly random symptoms like what you're describing, are often a hallmark of MS. I hate to have to say that, but it's the sad truth. I spent the better part of the year before my diagnosis, smelling an overlay of electrical burning. I could still smell stuff, but over it all? Burning. Drove me nuts. Finally went away, and I put it out of my mind. To the point that I even forgot to mention it in the upheaval of diagnosis. So mention everything. And then a few days later, request the doctor's notes to make sure he/she noted what you said. The often fail to do that.

OK, I'm taking off my mail-order stethoscope and my bossy "here's what to expect next" hat now, and just say, I'm always thinking about you and hoping for the very best for you.

Thank you! It helps to know this is "normal" and to make sure the doctors know that too. I'm learning so much right now at the same time as trying to not obsess or focus too much and imagine things. I have another very good clinic I can ask to see, but it is said to be not as good and would mean my records all had to be transferred between different clinic systems since the one is connected to the place I see my GP and the hospitals I have been in. This all seems like enough of a challenge without having doctors across multiple systems that dindo share records usually.

Burning smell? I wonder... I have been smelling something like that for the last year or more. Not constant, but on and off. DH has been sent to track down burning wires that he can't smell but I am sure are there. (One time I was right but the rest have been nothing.)

What a crazy thing this is. I never really considered all of the weird things a brain can do.

 

[ksinger]

Thank you! It helps to know this is "normal" and to make sure the doctors know that too. I'm learning so much right now at the same time as trying to not obsess or focus too much and imagine things. I have another very good clinic I can ask to see, but it is said to be not as good and would mean my records all had to be transferred between different clinic systems since the one is connected to the place I see my GP and the hospitals I have been in. This all seems like enough of a challenge without having doctors across multiple systems that dindo share records usually.

Burning smell? I wonder... I have been smelling something like that for the last year or more. Not constant, but on and off. DH has been sent to track down burning wires that he can't smell but I am sure are there. (One time I was right but the rest have been nothing.)

What a crazy thing this is. I never really considered all of the weird things a brain can do.

Well, in the interests of precision, that is pretty much how my perception was too. It would be better in the AM, and then would sneak up to perceptible levels during the day and evening. I didn't notice it as in forefront of my mind at all times, but it seemed to almost always to be there if I paid attention. It was worst in the PM. I too asked my husband repeatedly, if something was burning, which is fairly entertaining because his sense of smell is REALLY truncated (that tends to go along with colorblindness, which he has to a marked degree). But even he was able to assure me, no sweetie, no fires.

Now my sense of smell is mostly OK, but I still have days when everything seems....flat somehow. Then it comes roaring back the next day. Which is good, because I post a lot in the Frangrance of The Day thread. Anyway, I just chalk it up to a few shorts in the wires, and enjoy when everything is working, which it does most days.

And yes, brains are definitely weird and mysterious.

 

[redwood66]

Still thinking of you TP. I am so glad you are getting the care you need. ((TP))

 

[TooPatient]

Finally! I called the MS clinic again to find out why my referral was cancelled. The nurse sent it back for review again with a request for notes on WHY if they don't accept. No answer why it had been, but they see reason to get me in so I am finally scheduled with an MS specialist.

Now to read patient reviews of each doctor as I think I want one of the others instead of the one I am scheduled with. His comments included a large percentage of patients commenting on how he prescribes what he wants and isn't willing to discuss the different options. I don't feel that is a good fit for me as I like to be able to ask questions and look for what is the best option for ME and not just the standard go to.

 

[cflutist]

Finally! I called the MS clinic again to find out why my referral was cancelled. The nurse sent it back for review again with a request for notes on WHY if they don't accept. No answer why it had been, but they see reason to get me in so I am finally scheduled with an MS specialist.

Now to read patient reviews of each doctor as I think I want one of the others instead of the one I am scheduled with. His comments included a large percentage of patients commenting on how he prescribes what he wants and isn't willing to discuss the different options. I don't feel that is a good fit for me as I like to be able to ask questions and look for what is the best option for ME and not just the standard go to.

I agree that it is better to find a specialist who is willing to discuss options with you and your consider your preferences. Hang in there, hugs to you.

 

[yennyfire]

Glad you got an appointment! I agree that you need to advocate for yourself and see the dr you think you’d have the best rapport with.

I hope you get a plan in place and start making forward progress!

 

[ksinger]

Finally! I called the MS clinic again to find out why my referral was cancelled. The nurse sent it back for review again with a request for notes on WHY if they don't accept. No answer why it had been, but they see reason to get me in so I am finally scheduled with an MS specialist.

Now to read patient reviews of each doctor as I think I want one of the others instead of the one I am scheduled with. His comments included a large percentage of patients commenting on how he prescribes what he wants and isn't willing to discuss the different options. I don't feel that is a good fit for me as I like to be able to ask questions and look for what is the best option for ME and not just the standard go to.

Man, I am just the constant harbinger of downer news for you. And I'm sorry to have to be that. But here is the reality.

No matter where you are, the pool of doctors who know sh*t from shinola when it comes to MS, is thiiiiiiis big. The number of neurologists who specialize in MS is very very small. In my metropolitan area there are only 4, maybe 3 now because one I know was spooling down to retirement, who specialize in MS. When the doctor I see left where he was for another hospital, the neurology clinic he was in did not offer to move me to another doc, they just said, "You can follow him or go to the MS clinic, but we can't treat MS here anymore". So yeah, not a lot of them. If you even have 10 in your area, I'd be mightily impressed.

Unfortunately, the only docs who can diagnose (and prescribe) for MS, are neurologists. And neurologists are..well...neurologists. They tend to suffer from MDeity complex and lack of bedside manner more than other specialties, so you just have to get prepared for that. They are often about the big sexy diagnosis, the thrill of the hunt, if you will, and some of them are really good at it. But they are often not nearly as good at actual care once that process is complete. Be warned. Finding one who can diagnose AND be a human, can be a herculean feat.

There are lots more meds now for MS, but none of them is without side-effects, some of which can be very serious. Most of them are daily injections, or infusions.

In spite of the hoopla, once the diagnosis is made, the rest of it ain't rocket science and there's not that much to pick and choose from. If the doc declares you a CIS, then the current paradigm says they will want you on a med if your particular situation indicates to them that you are at higher risk of developing full-blown MS. He's likely NOT going to approve if you say you'd rather wait and do nothing, so be prepared for that, if you ask about it.

Of the list of meds, there are only a few that are approved for CIS, so your actual selection of meds will be limited. There may be more, but last info I have says the FDA has only approved Avonex, Betaseron, Extavia, and Copaxone, all injections. I've not heard of any unapproved off-label prescribing of the higher level MS meds. They are just too freaking expensive, which means the insurance companies probably buck up pretty hard. They also come with a much nastier set of potential side-effects. Yeah, it's picking and choosing amongst a veritable pile of less than delightful options.

Anyway, this might be of help. It's from the National MS Society, which means it will be a bit high level and unicorn-y, but still lots of good info. All current MS meds are listed.
http://www.nationalmssociety.org/Na...hure-The-MS-Disease-Modifying-Medications.pdf

This is a primer on how MS docs approach treatment. It's by an actual MS doc. I like his videos.

Bottom line, they will probably push you to a med, and want you to do yearly MRIs to check for new lesions, and treat any symptoms you report as problematic, as they occur.

As always, I'm thinking of you and wishing you the clearest possible path through the maze you've fallen into. These are very tough decisions that can impact your future. But as I've mentioned before, you do have to live right now, so don't forget to do that.

And any more improvements on your eye? I hope so.

 

[TooPatient]

Man, I am just the constant harbinger of downer news for you. And I'm sorry to have to be that. But here is the reality.

No matter where you are, the pool of doctors who know sh*t from shinola when it comes to MS, is thiiiiiiis big. The number of neurologists who specialize in MS is very very small. In my metropolitan area there are only 4, maybe 3 now because one I know was spooling down to retirement, who specialize in MS. When the doctor I see left where he was for another hospital, the neurology clinic he was in did not offer to move me to another doc, they just said, "You can follow him or go to the MS clinic, but we can't treat MS here anymore". So yeah, not a lot of them. If you even have 10 in your area, I'd be mightily impressed.

Unfortunately, the only docs who can diagnose (and prescribe) for MS, are neurologists. And neurologists are..well...neurologists. They tend to suffer from MDeity complex and lack of bedside manner more than other specialties, so you just have to get prepared for that. They are often about the big sexy diagnosis, the thrill of the hunt, if you will, and some of them are really good at it. But they are often not nearly as good at actual care once that process is complete. Be warned. Finding one who can diagnose AND be a human, can be a herculean feat.

There are lots more meds now for MS, but none of them is without side-effects, some of which can be very serious. Most of them are daily injections, or infusions.

In spite of the hoopla, once the diagnosis is made, the rest of it ain't rocket science and there's not that much to pick and choose from. If the doc declares you a CIS, then the current paradigm says they will want you on a med if your particular situation indicates to them that you are at higher risk of developing full-blown MS. He's likely NOT going to approve if you say you'd rather wait and do nothing, so be prepared for that, if you ask about it.

Of the list of meds, there are only a few that are approved for CIS, so your actual selection of meds will be limited. There may be more, but last info I have says the FDA has only approved Avonex, Betaseron, Extavia, and Copaxone, all injections. I've not heard of any unapproved off-label prescribing of the higher level MS meds. They are just too freaking expensive, which means the insurance companies probably buck up pretty hard. They also come with a much nastier set of potential side-effects. Yeah, it's picking and choosing amongst a veritable pile of less than delightful options.

Anyway, this might be of help. It's from the National MS Society, which means it will be a bit high level and unicorn-y, but still lots of good info. All current MS meds are listed.
http://www.nationalmssociety.org/Na...hure-The-MS-Disease-Modifying-Medications.pdf

This is a primer on how MS docs approach treatment. It's by an actual MS doc. I like his videos.

Bottom line, they will probably push you to a med, and want you to do yearly MRIs to check for new lesions, and treat any symptoms you report as problematic, as they occur.

As always, I'm thinking of you and wishing you the clearest possible path through the maze you've fallen into. These are very tough decisions that can impact your future. But as I've mentioned before, you do have to live right now, so don't forget to do that.

And any more improvements on your eye? I hope so.

Keep being my harbinger! I truly appreciate all of the information you are sharing as I prefer to he prepared for what is to come and have questions ready to go. Knowing some of the different approaches also lets me address those with a doctor rather than just following blindly in things that will impact the rest of my life.

I am in the Seattle area so hoping that means MS specialists are around. The clinic I am set to go to seems to be pretty good. I know there are several others in the area too and (I think) research even. A friend's husband has MS so he has been giving me names of doctors with thumbs up and down.

I am fighting the urge to hide my head and pretend it isn't even here. Go on about life and forget the whole thing. I know that is probably a bad thing to do (like Dr. Boster's "wait and watch" approach he doesn't like.

My eye is better, but not normal yet. Hard to describe. I'm seeing the neurological opthalmologist on Monday so will have more scientific measurements to compare to my exam in December then when it started in March and again at the peak of bad in March.

I swear though.... If I hear one more person say how glad they are it is likely "just" MS and "nothing serious" I may just lose it.

 

[Arcadian]

MS IS serious! they must be on crack. I'm really sorry you're going through this. From what you said It sounded so much like autoimmune disease but so many out there. MS is not a walk in the park.

 

[ksinger]

I swear though.... If I hear one more person say how glad they are it is likely "just" MS and "nothing serious" I may just lose it.

Oh dear, I so understand that! Thank you NMSS and big pharma, for deluding the general public to what MS really is. Sometimes it does look like the attractive young fit woman hiking across the stream (on a pill, ye gods) and climbing a mountain. But at some point for everyone, it becomes something darker. It can often be lived with - medicated, worked around, but often the symptoms are far worse than people understand. Most people only understand "bad" to be a limb dangling by a sinew. Anything else? But you look so good!

And I'm glad you have someone local to give you the lay of the land there. MS docs are both required AND often the bane of our existence. Finding a good one is....fraught.

 

[TooPatient]

MS IS serious! they must be on crack. I'm really sorry you're going through this. From what you said It sounded so much like autoimmune disease but so many out there. MS is not a walk in the park.

Some say they don't know about it but figure it must be curable because they hear it mentioned. Some have "friends" with it who are "just fine" so figure it is no big deal. (Rather than the reality which seems more like people suffer silently and try their best to keep living. No one wants to hear about pain and difficulty all the time and no one wants to have to keep thinking about it either.)

The neurologist said not necessarily MS, but likely in the same family. I don't think any of the options are great. Just learning what I can so I can figure out what (if anything) to do to slow progression and get on with my life.

 

[LightBright]

Hi Too Patient,
Have you checked your vitamin D levels? 25(OH)D levels of between 40-60ng/ml are recommended by MS experts for people with MS. This means supplemental levels of about 4,000 IU D3 daily. If you have pancreas or kidney problems, and depending on your body weight and sun exposure you may need more or less than this daily dose. Here is an article.

http://journals.sagepub.com/doi/full/10.1177/1352458517738131

By the way, the 25(OH)D range suggested for optimal results is a range that has been recommended and scrutinized by Endocrine experts, Cancer experts, Heart experts and maternal and fetal health experts, among others. In other words, separately, the medical profession is finding optimal results with various illnesses in the range specified. To me this is further reason to attempt to get your levels higher, if necessary.

Good luck and I hope you are stable and feeling better soon.

 

[TooPatient]

Hi Too Patient,
Have you checked your vitamin D levels? 25(OH)D levels of between 40-60ng/ml are recommended by MS experts for people with MS. This means supplemental levels of about 4,000 IU D3 daily. If you have pancreas or kidney problems, and depending on your body weight and sun exposure you may need more or less than this daily dose. Here is an article.

http://journals.sagepub.com/doi/full/10.1177/1352458517738131

By the way, the 25(OH)D range suggested for optimal results is a range that has been recommended and scrutinized by Endocrine experts, Cancer experts, Heart experts and maternal and fetal health experts, among others. In other words, separately, the medical profession is finding optimal results with various illnesses in the range specified. To me this is further reason to attempt to get your levels higher, if necessary.

Good luck and I hope you are stable and feeling better soon.

I don't think they have checked those levels yet. I know I saw B12 go by in the string of blood work so it might have been in there too. I'll ask my Dr to check all of the vitamin levels too in the next batch of tests. I do usually remember to take a D3 supplement every evening. It is 5,000IU so probably enough but always good to have them check.