Diagnosed with CIS today, more tests to come - things to know/ask?

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sat May 11, 2019 1:37 pm

ElliotB wrote:
Sat May 11, 2019 9:13 am
Current DMDs typically do not prevent long term progression and are not advertised to do so.

I have been taking Copaxone for almost 6 years and when presented info about it originally by my neurologist, one of the first things I noticed was that progression of MS was clearly shown not to be altered by taking Copaxone. Although unofficially they consider it a possibility.

And while the thought of taking a capsule instead of an injection may seem like a good/convenient choice, PML concerns (a rare brain infection that usually leads to
death as there is no cure) as well as reduced white blood cell count and liver issues with an easy to take drug like Tecfidera warrant serious thought about it - there are safer options. These are very,very serious side effects/issues! All the DMDs have side some side effects, but some are too serious/deadly to make them a choice to consider and other drugs have been shown to be well tolerated with minimal or certainly less serious side effects that are often not life threatening.
Oh, I know. I did look at all the potential side effects for every DMD, as well as the % reduction in relapses and new lesions for all of the studies done on them. I already know the Interferons are not something I can ever go on, so it was an exclusion game from there.

I actually have a really severe phobia of throwing up left over from stuff that happened in my childhood, so deciding to try to Tecfidera was not an easy choice for me. The reality is though, if I don't go on medication just because I'm scared (or because, in the case of Copaxone, it isn't actually effective for 8-9 months, and then is only a little over half as effective at reducing progression or relapses than Tecfidera) of side effects, it's only going to end up hurting me since the chance that this is actually MS is very high at this point.

I've read all the research and merits of starting on heavier DMDs even with just an initial episode, and I've also read more recent studies showing that more aggressive oral/IV DMDs are way more effective (with IV ones coming out on top, but obviously the side effects are much worse and PML is more likely with the "best" one) on younger patients. Tecfidera is the starting point for me, if I can get an exception to get on it and if I can handle the side effects (I'm fully prepared to be throwing up at work when I take it, I'm generally not lucky with medication that causes nausea, but if that's what it takes, that's what it takes).

Tecfidera has a lower chance at causing PML than other aggressive DMDs, and obviously does affect your immune system like all but Copaxone, as well as having the chance of liver trouble, but the risks also come with the tradeoff that it's much more effective than any of the shots. I would rather test severe side effects (it's sort of the midway point between really serious and low-impact in terms of side effects) to start with and see if they're tolerable than to settle for the one drug that has almost no side effects, but also won't help as much. I think it's a reasonable first medication considering that it's not one of the ones with a high-ish chance of causing things like cancer and such, and not like Tysaris which has a noticeable chance of causing PML and much worse other side effects.

All of this could very well be a moot point if my insurance denies me, and I'll have to try Copaxone, but an aggressive DMD will be my next step when/if new lesions appear. I have been on medication before that had a high chance of affecting my liver, and never had trouble. I used to drink like once every few months socially, but I'm cutting that out completely regardless of what I go on, as well as adding things into my diet that I've just never bothered with but are really good for long term health.


My main worry at this point, aside from just medications, is the fact that I'm still having significant symptoms. Not enough to affect my day to day life MUCH, but my grip in my right hand is noticeably weak, and the neurologist confirmed that, along with the residual numbness in half that hand. I have an intention tremor in my right leg that has persisted through both rounds of steroids (dexmethasone and SoluMedrol), and I'm still getting severe back pain at random (which is why he's doing a lumbar MRI next), as well as blurry vision. The eye doctor my neuro sent me to on Monday said he thought it was just a side effect from the SoluMedrol, but most of the blurriness has persisted, so my neuro thinks it might actually be a mild case of optic neuritis. I'm on another 5 day stretch of Dexmethasone to see if it clears up the lingering symptoms, particularly the blurry vision, which is making it hard to focus on words or see things straight.

My symptoms have improved enough that my neuro cleared me to go back to work on Tuesday, with only one accommodation, but my boss is really lax and has been really supportive through this, so we'll work things I can't handle out as we go. The accommodation I asked for was just so other departments wouldn't throw a fit because they may not be as understanding, and I'm not giving everyone details on what's going on with me - I've been through the whole gossip bull back in high school when I was diagnosed with Fibromyalgia, but the stigma associated with MS is much worse. Most of the information is being kept in our department, with some executives being in the know as well. I'm really excited to head back to work, whether or not the third round of steroids does the trick. The neurologist warned me that it may take days, weeks, months, or the symptoms I still have may never go away.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by ElliotB » Sat May 11, 2019 2:11 pm

There is a lot of misleading information on the WWW. Just because you read it on the web, does not mean it is true. It can often be difficult to get the right answers.

I will give you one example. You made the comment "it isn't actually effective for 8-9 months" regarding Copaxone. Not sure where you read that but I got similar info when I started taking it yet from my personal experience, this is simply not true. I had certain specific symptoms disappear within 2-3 days of starting Copaxone that have never returned. Others have reported similar experiences. But the 'official' position of TEVA is in line with your statement.

When it comes to DMDs, there is a lot of uncertainty but what is certain is that many thing you do in your life with regard to diet, nutrition, exercise and lifestyle (elimination of stress) will likely have an effect on your overall health and your MS health both now and in the future.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sat May 11, 2019 2:32 pm

ElliotB wrote:
Sat May 11, 2019 2:11 pm
There is a lot of misleading information on the WWW. Just because you read it on the web, does not mean it is true. It can often be difficult to get the right answers.

I will give you one example. You made the comment "it isn't actually effective for 8-9 months" regarding Copaxone. Not sure where you read that but I got similar info when I started taking it yet from my personal experience, this is simply not true. I had certain specific symptoms disappear within 2-3 days of starting Copaxone that have never returned. Others have reported similar experiences. But the 'official' position of TEVA is in line with your statement.

When it comes to DMDs, there is a lot of uncertainty but what is certain is that many thing you do in your life with regard to diet, nutrition, exercise and lifestyle (elimination of stress) will likely have an effect on your overall health and your MS health both now and in the future.
Could not be true overall, yes, but at least some studies they'd done on Copaxone showed that it was no more effective than placebo for the first 3 months, but by 8-9 months most people saw improvement and a slowing of the progression. Mileage might definitely vary, though. I didn't bother looking at non-credible sites or health sites, which often do have misleading information. I only went off official studies and information gathered on the official MS sites. Spent a few hours looking at the National MS Society's PDF files (which are really helpful, by the way, there's a LOT of information there, especially for new diagnoses), which is how I found a summary of all the studies done on efficacy of all the medications. They're unbiased, so they don't make recommendations on medications, just make the information available to you. I wouldn't have known the Interferons are a dangerous choice for me otherwise, though my doctor would've mentioned it regardless.

My neurologist heavily recommended those sites when he first called me after he got the brain results, so I did my research before I went back into him. It helped me describe better the shaking I've had in my leg for the past 3 weeks (which honestly I'd described very vaguely before, since I didn't realize that it happening only as I move my leg forward was an important distinction), as they have a list of all the possible symptoms and how they manifest.

Your experience with the meds working quickly though does give me hope for if these symptoms don't disappear in the next few days. I'd really hate to have to deal with this tremor permanently, at least this early in the disease. The grip strength is much less restrictive, even if it is my dominant hand (I'm multihanded, but all I do with my left hand is hold a fork and write, so I consider my right (weak) hand my dominant one). I was always very active before, so I'm hoping to get back to that as soon as I can (I usually commute 30 minutes to work by bike, but obviously won't be doing that in the near future). I'm making some definite lifestyle changes in regards to food though, and I'm used to running on permanent sleep deprivation with intermittent insomnia, but am going to be very careful to make sure I get enough sleep at night after these steroids are done, whatever it takes.

I've tried melatonin in the past, and it tends to cause stomach upset for me, but I'll try it again with no other options. I'd rather not go back on sleeping pills, as I never felt that they gave me very restful sleep, and I was one of the people with the rare adverse effect of hallucinations while on them.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Sat May 11, 2019 5:26 pm

Hi,
The copoxone (also known as Glatiramer acetate,Copolymer 1 or Cop-1) is a therapy for remitting relapsing MS. It was originally designed as a sequence of the amino acids; glutamic acid, lysine, alanine and tyrosine to crudely resemble myelin basic protein. In an animal model (EAE), T cells that were reactive to the medication were producing Th2 (anti-inflammatory) cytokines which accumulated in the central nervous system. This led researchers to speculate that the medication may exert a bystander suppression of inflammation.
In simple terms, they have no idea how it works.

The Tecfidera is also has a similar problem. It was derived from observations that a topical psoriasis cream made of dimethyl fumarate seemed to lessen MS symptoms . That led to an oral drug called BG12, then a drug called Fumaderm, then onto Tecfidera. They just don't know how it works. The thinking is the dimethyl fumarate interacts with glutathione, a strong, natural antioxidant. In turn, this blocks a transcription factor called NF kappa B (NFкB). When this is blocked it can't enter the nucleus of the cell and bind to DNA. This prevents triggering a cycle of proinflammatory species. It's just a theory. No one knows.

Your neurologist may as well be asking if you like chocolate or strawberry.

He is proposing two treatments that seem to work for RRMS. One (Copoxone) is focused on T cells so it is looking at the adaptive immune system and the other (Tecfidera) is targeting activity in the unlearned primitive immune system called the innate system.

Neither will be described as a cure so obviously more is going on.

The tremor you mentioned is sometimes called clonus. If you imagine your nerves consist of an upper motor neuron and a lower motor neuron, then the upper is like an on/off switch whilst the lower always aims to contract a muscle. If the upper switch is damaged then the lower nerve just keeps trying to signal your muscle to contract. There are loops with other neurons that don't even go back to the brain.

In a sense, that tremor is an indication you are at war with yourself. The lower motor neuron is constantly telling your muscle to contract. You need to focus on how to stretch the muscle and neither drug has anything to do with this. The damage is affecting the upper motor neuron and you can't rebuild it with a drug.
Neurologists are smart people but in some ways they are dumb. Taking what amounts to an anti-inflammatory medication won't restore damaged myelin, it might slow the rate of future damage (who knows). The drugs are as far as neurologists go.

I am ambivalent about drugs. The only prescription drugs I take are Dantrium (which you don't need yet) and valacyclovir which blocks herpes family viruses (which I take to control EBV).
Both the adaptive and innate immune systems are activated in MS. I doubt T and B cell therapies do much at all, except at the margin and that might be fine for some.

I suggest you really need to look after how you make ATP. Buy a copy of "Metabolic Cardiology" by Stephen Sinatra. A cell is a cell no matter where you look (except red blood cells). What he says can be applied to your whole metabolism. He does mention fibromyalgia in his book. The intellectual basis of that book is a work called ATP and the Heart by Prof Joanne Ingwall. Its way too hard unless you have a scientific bent. Stick with Stephen Sinatra.

I's also suggest you take up a form of eccentric muscle movement. Don't just sit there or you might tighten up. My strong preference is pilates with the studio equipment (not mat pilates). The machines give you a lot of feedback and the exercises can stretch that tightness out. If you want to go down that path, I can go into more detail. This is a video i was asked to make a couple of years ago that may be of interest about it .
It's half an hour of your life you won't get back so I hope it helps!

Regards,

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Sat May 11, 2019 7:08 pm

AmbiCat wrote:
Sat May 11, 2019 2:32 pm
I've tried melatonin in the past, and it tends to cause stomach upset for me, but I'll try it again with no other options. I'd rather not go back on sleeping pills, as I never felt that they gave me very restful sleep, and I was one of the people with the rare adverse effect of hallucinations while on them.
Have you tried a sublingual melatonin? I've used these by Superior Source. The tablets are small and dissolve in about a minute or less.

https://www.vitacost.com/superior-sourc ... -tablets-1

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Sat May 11, 2019 7:32 pm

Scott1 wrote:
Sat May 11, 2019 5:26 pm
The Tecfidera is also has a similar problem. It was derived from observations that a topical psoriasis cream made of dimethyl fumarate seemed to lessen MS symptoms . That led to an oral drug called BG12, then a drug called Fumaderm, then onto Tecfidera. They just don't know how it works. The thinking is the dimethyl fumarate interacts with glutathione, a strong, natural antioxidant. In turn, this blocks a transcription factor called NF kappa B (NFкB). When this is blocked it can't enter the nucleus of the cell and bind to DNA. This prevents triggering a cycle of proinflammatory species. It's just a theory. No one knows.
Dimethyl fumurate is a potent oxidizing agent that is thought to activate the Nrf2 transcription factor.

The history of dimethyl fumarate is interesting. Chinese manufacturers of leather products, e.g., shoes & couches, used to use it as an anti fungal agent, but it was burning people's skin! This use of dimethyl fumarate was banned by the EU.

viewtopic.php?p=215116#p215116

Lots of other molecules found in nature also activate Nrf2. See (free full text)...


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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by ElliotB » Sun May 12, 2019 5:08 am

"Your experience with the meds working quickly though does give me hope for if these symptoms don't disappear in the next few days."

MS, more specifically RRMS, by its nature of remission after an attack, gives the sense of improvement over the short term whether you take drugs or not. BUT DMDs, IF they work, typically don't work like a typical 'pain' reliever when it comes to reducing/relieving symptoms, rather they work gradually over time. Over a longer time frame, hopefully users find a reduction in relapses. Which could perhaps lead to slower progression of the disease but there is no definitive evidence that this is the case. So basically the goal of DMDs is to reduce relapses. Keep in mind that most with MS have mild courses of the disease with only minimal symptoms and inconveniences. But of course not all. And that is why I take a proactive approach and feel all with MS should be proactive when it comes to every aspect of one's health.

Another consideration when it comes to 'improvement' in symptoms is that MS is a nerve disease and while damaged nerves can heal in time, it can take 8 or more years to heal IF they heal at all, obviously depending on the damage. And of course those with mild damage heal much faster. There are currently no medications that cause damaged nerves to heal.

Be patient!
Last edited by ElliotB on Sun May 12, 2019 7:28 am, edited 2 times in total.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Zyklon » Sun May 12, 2019 6:28 am

DMD is kinda a trial and error thing. Your first goal must be going into remission. If CRAB (interferons) does the job, consider yourself lucky. I prefer needles over PML risk.

We share a very similar story and I think it may help you. Take care and everything will be fine (Imamoglu wins...)
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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by vesta » Sun May 12, 2019 8:35 am

ElliotB wrote:
Sat May 11, 2019 9:13 am
"he discusses the lack of efficacy of several of the DMDs in preventing long term progression of disability."

Current DMDs typically do not prevent long term progression and are not advertised to do so.

I have been taking Copaxone for almost 6 years and when presented info about it originally by my neurologist, one of the first things I noticed was that progression of MS was clearly shown not to be altered by taking Copaxone. Although unofficially they consider it a possibility.

And while the thought of taking a capsule instead of an injection may seem like a good/convenient choice, PML concerns (a rare brain infection that usually leads to death as there is no cure) as well as reduced white blood cell count and liver issues with an easy to take drug like Tecfidera warrant serious thought about it - there are safer options. These are very, very serious side effects/issues! All the DMDs have side some side effects, but some are too serious/deadly to make them a choice to consider IMHO and other drugs have been shown to be well tolerated with minimal or certainly less serious side effects that are often not life threatening.
Excellent advice!

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Sun May 12, 2019 1:34 pm

Scott1 wrote:
Sat May 11, 2019 5:26 pm

The tremor you mentioned is sometimes called clonus. If you imagine your nerves consist of an upper motor neuron and a lower motor neuron, then the upper is like an on/off switch whilst the lower always aims to contract a muscle. If the upper switch is damaged then the lower nerve just keeps trying to signal your muscle to contract. There are loops with other neurons that don't even go back to the brain.

In a sense, that tremor is an indication you are at war with yourself. The lower motor neuron is constantly telling your muscle to contract. You need to focus on how to stretch the muscle and neither drug has anything to do with this. The damage is affecting the upper motor neuron and you can't rebuild it with a drug.
Neurologists are smart people but in some ways they are dumb. Taking what amounts to an anti-inflammatory medication won't restore damaged myelin, it might slow the rate of future damage (who knows). The drugs are as far as neurologists go.
Yeah, I think my neurologist's hope was that the optic neuritis would mostly be helped - he didn't seem hopeful that the tremors or numbness would get much better at this point (and the tremor seems a LITTLE better on day 3, whereas the numb hand does not - I've fallen twice since yesterday by losing my grip - so I think he's right, but the blurry vision seems a little better than 2 days ago). My tongue's going numb at random now too, which is totally new, so my body just seems to be throwing a hissy fit at this point.

Thank you so much for going into more detail about the tremors. National MS Society does explain the 3 different spasms/tremors we can get, but doesn't go much further into detail beyond how they manifest, and that they have very limited options for treatment if steroids don't work. He'll try me on something to attempt to minimize the tremor if it's still bad next week, but hopefully it's at least a little improved.

I am planning on, when I'm more stable, using the wellness incentive my insurance offers and applying the bonus toward a gym membership so I can stretch and keep muscle toning in addition to biking, assuming the tremors are a bit improved. Biking itself does help stretch out my legs overall, but it won't do a whole lot down near the bottom of the leg, which is where the tremor is happening.
ElliotB wrote:
Sun May 12, 2019 5:08 am
"Your experience with the meds working quickly though does give me hope for if these symptoms don't disappear in the next few days."

MS, more specifically RRMS, by its nature of remission after an attack, gives the sense of improvement over the short term whether you take drugs or not. BUT DMDs, IF they work, typically don't work like a typical 'pain' reliever when it comes to reducing/relieving symptoms, rather they work gradually over time. Over a longer time frame, hopefully users find a reduction in relapses. Which could perhaps lead to slower progression of the disease but there is no definitive evidence that this is the case. So basically the goal of DMDs is to reduce relapses. Keep in mind that most with MS have mild courses of the disease with only minimal symptoms and inconveniences. But of course not all. And that is why I take a proactive approach and feel all with MS should be proactive when it comes to every aspect of one's health.

Another consideration when it comes to 'improvement' in symptoms is that MS is a nerve disease and while damaged nerves can heal in time, it can take 8 or more years to heal IF they heal at all, obviously depending on the damage. And of course those with mild damage heal much faster. There are currently no medications that cause damaged nerves to heal.

Be patient!
Yeah, I'm trying to just get through this with my sanity intact at this point. If my employer wasn't so understanding and actually concerned about me, I think the past 3 weeks would've been much more rough. My roommate knows people with MS as well, so she's been here talking me through it and keeping my anxiety/depression at a tolerable level, since she knows that it's not terribly debilitating for most people, as everyone who doesn't have it assumes that it is.

My first 2 weeks of this were spent crying almost nonstop because of the publicity that Selma Blair has been giving MS (which is good that more light is being shed on it, but not so good that she's so far progressed due to being diagnosed real late, and furthers the notion that everyone with MS is severely handicapped), but this forum helped a lot in alleviating that fear and showing me that most people with it are still plenty functional, especially early on.

I'm definitely going to be patient with any med I go on. If it's the Tec, I'll put up with the nausea since I know it tends to dissipate after a month or two. If it's the Copaxone, I know it'll still be effective, but I don't expect to see rapid results or anything since most people don't with any of the DMDs. I know the point isn't to fix symptoms for any of them, just to reduce relapses and reduce the amount of new lesions to some extent.

My neuro was very up front with me before putting me on this last round of steroids and made sure I knew that the symptoms I have now could be permanent if they don't just take weeks/months to disappear. Each round of steroids has helped somewhat, but if 3 days into the third round the numbness isn't much improved, I don't expect miracles. It's the same waxing/waning with mornings being worse than evenings as I've had with the other rounds of steroids. My hand is usable at this point, vs not even being able to turn off my toothbrush or lift a cup 2 weeks ago, so I'm ecstatic enough about that.

It's helpful to know that nerves can have the potential to heal - I actually wasn't aware of that. I'm already prepared for at least some short term issues with mobility (though my balance is better now that my feet aren't numb, thank god) and a learning curve with trying not to use my right hand for everything, particularly holding onto doorways/railings for balance. I'm sure I'll hit more low points and get more depressed again when I see how different it is working with these lingering symptoms, but I'm still holding out hope that at least some of the symptoms won't be permanent.


I'm hoping that a future spinal tap will be able to give a definitive diagnosis (neuro says it wouldn't be telling right now, since if this is a once-off virus - something he doesn't see as likely at this point - the inflammation wouldn't necessarily mean MS, whereas some months in the future, if it showed banding it would be confirmed, and my treatment options would open up more if needed), but for now my focus is just getting used to working again and getting on a DMD.

I'm seriously so thankful for everyone who's been posting experiences/advice here. It's been a complete roller coaster of emotions and physical debility in the past weeks. I appreciate it more than I can say.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Zyklon » Sun May 12, 2019 2:24 pm

Trust your body, it can do ALOT of repairs. You just need to boost it.
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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Sun May 12, 2019 2:55 pm

Hi,
Don't forget to try some massage. If you have some muscles that are tight they pull your posture out of whack. To compensate you start to move in unusual ways (e.g hanging on to things). A masseur will be able to release the muscles on either side of the spine called the erector spinae. If you are really tight, it might hurt.

When you resume some exercise you will need activate a muscle deep inside your torso called the psoas. This is the muscle that allows you to lift your leg. The leg muscles aren't really strong enough to do it on their own. It's a hard muscle to get to so most rehab people don't try. They can check it by doing a 'Thomas stretch" but they aren't great in a short session at working it. Pilates is all over it.

Watch, also, what your feet are doing. If one foot starts to turn in and you begin lifting your leg in a circular fashion then a group of muscles in your hip, called the external rotators, need work. These are muscles that interact with the glutes. They are deep. If they don't trouble you yet then keep stretching them to save a lot of trouble later. The most important one to watch is called the periformis. The sciatic nerve passes through this muscle. If the muscle spasms it will squeeze the nerve and you will get cramps down your leg.

A simple thing to add is magnesium as it binds to the receptor that can block the release of too much calcium in your muscle cells. You're looking for the word glycinate on the label.

When I was in your position and struggled to balance, I didn't find physios were any help at all. They have a "cookie cutter" approach where one size fits all. I got what I needed from pilates for two reasons 1) they are focused on functional movement (which is why ballet dancers love it) and 2) the equipment gives you feedback.

If you want to know where you really are, try walking up a flight of stairs without hanging on (but be careful and take a friend).

Regards,

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Tue May 14, 2019 1:59 pm

First day back at work, and thankfully my last day of Dexmethasone. Being on steroids for almost 3 weeks has taken its toll, and I'm hoping that the extreme fatigue dissipates by next week like it did with the SoluMedrol after that one made me so sick. Neuro did warn me before starting this third round of steroids that this is like 2 years worth that I've had in less than a month, and it can hurt the body's natural ability to create cortisol. I'm being careful to snack/eat small meals often to try to combat the energy loss, even though I really have no appetite at all.

Takeaway from this third round: assuming things stay as they are, the optic neuritis is much improved (not all the way gone, but a very significant reduction), my right hand numbness was almost gone yesterday, back today, but as usual gets better as the day goes on. It's my least significant symptom now, and no numbness anywhere else, so I'm happy about that. Weakness in that hand has not improved at all. My leg has been stiff and weak all day, and the tremors started about an hour into my shift. I spent a lot of time sitting down and resting the leg when the tremors started making it too hard to walk without having to stop to let the shaking subside every few steps.

I'm hoping part of it is just getting my leg used to being used more. I was taking walks as much as I could while I was out of work for those 3 weeks, but there were a lot of days when I could barely make it into my kitchen, let alone go outside (I live on the second floor of a house, so going outside by itself isn't an easy task), so it was mostly just a few times a week where I'd manage to go out on long-ish walks.
Scott1 wrote:
Sun May 12, 2019 2:55 pm
Hi,
Don't forget to try some massage. If you have some muscles that are tight they pull your posture out of whack. To compensate you start to move in unusual ways (e.g hanging on to things). A masseur will be able to release the muscles on either side of the spine called the erector spinae. If you are really tight, it might hurt.

When you resume some exercise you will need activate a muscle deep inside your torso called the psoas. This is the muscle that allows you to lift your leg. The leg muscles aren't really strong enough to do it on their own. It's a hard muscle to get to so most rehab people don't try. They can check it by doing a 'Thomas stretch" but they aren't great in a short session at working it. Pilates is all over it.

Watch, also, what your feet are doing. If one foot starts to turn in and you begin lifting your leg in a circular fashion then a group of muscles in your hip, called the external rotators, need work. These are muscles that interact with the glutes. They are deep. If they don't trouble you yet then keep stretching them to save a lot of trouble later. The most important one to watch is called the periformis. The sciatic nerve passes through this muscle. If the muscle spasms it will squeeze the nerve and you will get cramps down your leg.

A simple thing to add is magnesium as it binds to the receptor that can block the release of too much calcium in your muscle cells. You're looking for the word glycinate on the label.

When I was in your position and struggled to balance, I didn't find physios were any help at all. They have a "cookie cutter" approach where one size fits all. I got what I needed from pilates for two reasons 1) they are focused on functional movement (which is why ballet dancers love it) and 2) the equipment gives you feedback.

If you want to know where you really are, try walking up a flight of stairs without hanging on (but be careful and take a friend).

Regards,
All really helpful info, once again. I have noticed that as the tremors get worse, I have to use walls/railings to balance myself more, and that's been causing some falls when I instinctively grab with my weak hand and can't hold on. I did pretty well today at using my arm instead, or at least my two fingers that don't have as much weakness on that hand, so luckily no falls.

I did try going up/down stairs a few times today to see how it was. It was hard from the get-go, but going down is significantly harder due to the balance issue with the tremor and not being able to rely on my hand. I do expect this to get a little easier once the fatigue from my exhausted adrenal glands wears off as the steroids make their way out of my system (I hope to god the recovery from this is faster than it was from the SoluMedrol), but the hand weakness and leg tremors are obviously here to stay for now.

In terms of actually exercising, when would you say it's safe to try doing something like bike riding again? Is it too dangerous to attempt with any tremor at all, or might it actually help overall by stimulating a lot of the leg muscles?

I'll definitely look into getting some Magnesium. That's one vitamin I've never really kept up with, and I know my multivitamin doesn't have much of it (and I haven't been able to take the vitamin this whole time due to it already causing minor stomach upset by itself with the iron that's in it, but I'll be back on it soon).




My neuro is running pre-emptive bloodwork in case the Tecfidera request does go through so I'll be able to start it right away if everything checks out. I'm not hopeful they will approve it, but I should know which DMD I'm going on by the end of next week.

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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Zyklon » Tue May 14, 2019 2:16 pm

Be careful with your blood sugar. 7 days x 1 gram cortisol messed up my levels.

Magnesium and D3 are extremely important during recovery.
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Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by Scott1 » Tue May 14, 2019 4:11 pm

Hi,

I'm certainly not against bike riding but the posture of the body is curled over the bike which shortens the psoas.
The chain of muscles I think you are describing are called iliopsoas. This video shows the ones I mean but there's no sound.
.
I understand everything you say about walking as I have been there.

Do the stairs as an exercise but only if someone is with you to catch you. There is a real risk of falling.

If you do try Pilates, only go to a very small class that has reformers at a minimum. Tell the instructor exactly what has happened and say some fool from half way around the world says this -" The psoas and iliacus are both tight and need lengthening and stretching, check external rotation and try clams if it's poor. Be aware abduction may be painful so avoid it if that is the case. The best exercises are leg and footwork, jumping and reverse knee stretch. If you have a high barrel, try rolling back over the barrel to release the QLs, genie and flat back won't help in this situation and may be counterproductive.
Side lying sleeper is good for glute max. Don't do mat work except on a Cadillac."

A responsible instructor will know exactly what I meant. You may have to work up to some exercises.

You can bike but when you do it the psoas is not working that hard. I am assuming you are still in pretty good shape.

Regards,

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