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

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
vesta
Family Elder
Posts: 607
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Has thanked: 2 times
Been thanked: 6 times
Contact:

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

Post by vesta » Mon Apr 29, 2019 1:16 am

AmbiCat wrote:
Sat Apr 27, 2019 7:21 pm
Thank you guys for all the support. I don't remember if Vitamin D is one of the things he tested for, but I get tested for that on a yearly basis since I was deficient about 7 years ago pretty badly. I also make sure to take multivitamins with D3 in them, but I'm outside a lot more than I used to be now that I bike to work even in the winter regardless.

The hospital also tested for anemia since I was pretty badly anemic a few years ago, but I figured it would come out normal (and it did) because I've had none of the same symptoms I know from anemia - and absolutely no symptoms period before last Saturday.

I've had Fibromyalgia since I was 15, so I'm used to relapses or flares from that and am pretty vigilant about noticing them. I'm also very cognizant of staying physically active and eating healthy - I know from growing up with FM that not being active makes me feel worse pretty quickly, but if I stay active it keeps the exhaustion and pain at bay. I eat healthy breakfasts, bring my own easy-to-make lunches to work, and cook a couple times a week unless the FM is flaring, in which case I do what I can.

I felt perfectly okay Friday and just wasn't on Saturday, spiraling ever since. The tremors in my right leg today almost kept me from walking period. A family member took me to the store to get some easy-to-eat things that might help me eat more even if I'm not hungry, and I was hugging the shopping cart the whole time because I was getting tremors in the bottom of that leg with almost every step.

Still having to force myself to eat. Can't eat more than twice a day (and one of those a day has just been my family forcing me to eat something they get me), but at least I'm eating a meal to get the pills down. Fingers aren't as stiff tonight, so I'm holding out hope that these steroids will work without me having to go to the hospital for an IV on Monday - it's just the
second day of them so far.

My neurologist has been really great at helping keep my very stubborn migraine disorder under control over the past 5 years, so I'm confident I'm in good hands with him, especially with him pushing out all the tests so quickly after these symptoms started.

I have a very physically active job, so I'm going a bit stir crazy being confined for a whole week, and I'm hoping no more steroids are needed after this so I can at least get back to work and figure out what to do in case the symptoms come back afterward.

Sorry about the walls of text >.<. I haven't really told many people in my life because it's such a serious thing, and I've been so terrified this whole week. Pretty much only a couple family members know, my boss, and a friend from work. I went in for a mandatory meeting at work on Thursday (it was a seminar-like thing for all staff, not actual work, so I was allowed to go). I ended up totally breaking down after the meeting because I couldn't walk well or use my hands much at all, and coming clean to two of the higher ups on what the diagnosis was leaning toward. That was, of course, before I found out the MRI test results, which only made the anxiety worse later that day. My boss has been totally supportive, but I'm an overachiever at heart so I feel extremely guilty for being out of work.

I think I'll at least feel better once I can start getting back to work once the symptoms subside, even if it may return. This has definitely been the scariest experience of my life, and there's a massive difference from just being too tired to get out of bed (Fibromyalgia) to literally not being in control of your own movements. I couldn't even turn my toothbrush off last night, and started crying when I couldn't open a bottle of water. I just want this episode to end, whether it comes back or not.
Greetings:

I stopped my first big attack with a Shiatsu massage. I believe the spine was under attack by a blood back jet and the massage stopped it. It took awhile to recover function, but I felt so relieved afterwards.

Even if that solution is unorthodox, getting a thorough massage which relieves tension in the back can do you no harm and may help enormously. If nothing else ask a friend to give you a good back massage.

Best regards, Vesta

The following preciously published on my site:

https://www.mscureenigmas.net

MY SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH

1. ENHANCE BLOOD/CEREBRO-SPINAL FLUID CIRCULATION

My analyses and emphasis on the fluid circulation issue set me apart from other alternative healing sites. I insist it is of vital importance.

If had known that my MS is essentially a pathology characterised by obstructed central nervous system fluid flows – blood and cerebrospinal fluid – I wouldn’t need a cane to walk today. That one simple concept changed my life forever, but it came too late to save me from handicap. It came in time to slow progression.

My research has concluded there exist three fundamental fluid obstructions. 1) skeletal obstructions of fluid flows – bones, ligaments, muscles, arteries. 2) spasms in the veins’ middle smooth muscle layer which obstruct blood flow and 3) stenosed veins in need of being ballooned open to overcome interior obstructions, the CCSVI issue.

Before undergoing venoplasty for CCSVI by an Interventional Radiologist (issue 3), I think one should verify that there is no skeletal obstruction (issue 1). The best diagnostic tool for that is a cinematic upright FONAR MRI. Chiropractors are probably the best therapists to determine and treat skeletal obstructions and may be able to suggest tools less expensive than the FONAR MRI. Issue number 2 may be the easiest to treat through relaxation techniques (yoga) or simple blood/cerebrospinal fluid circulation therapies such as massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming. The injection by an MD of a mixture of dexamethasone/lidocaine/thiamine used to treat trigeminal neuralgia may be considered.

2. DE-TOXIFY

After a lifetime of eating badly, ingesting antibiotics and other toxic chemicals, exposure to heavy metals and nuclear fallout, toxins build up in the body and need to be flushed out in order to maximize the benefit of ideal, personalized foods and supplements. Check out DETOXIFY on the Internet to find your preferred protocol. One example:
want2bike (From Thisisms.com)suggested
“Dr. Hyman explains his 10 day detox diet.

I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not? (It takes 5 days to withdraw from a food allergy).

See also my Detoxification and Supplements post.

3. OPTIMAL ANTI-INFLAMMATORY NUTRITION.

See C-Reactive Protein – Key to MS Diet

Diet is critical to many diseases, particularly « auto-immune ». However, areas of vulnerability differ. For MSers it’s the vascular system linked to the central nervous system that matters. Diet impacts production of C-Reactive Protein (CRP) – which in turn impacts the endothelium of the vascular system. Secondly, proper diet acts to reduce cellular inflammation thereby preventing spasms in the veins’ smooth muscle layer. It follows that for MSers proper diet facilitates blood/cerebrospinal fluid circulation. For those without a serious veinous obstruction, diet/supplements alone may suffice to heal

4. SUPPLEMENTS

I have been taking a customized Standard Process Supplement Protocol (with additions) recommended by my Kinesiologist/Nutritionist since 1984 so I won’t suggest a general plan.
As to Diet, consider my post Paleo-Macro-biotic diet.

As a general protocol consult Matt Embry’s excellent
http://www.mshope.com. (food, supplements, exercise, CCSVI).


5. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

6. Homeopathic remedy Oscillococcinum by Boiron to head off a virus. IT WORKS (unless perhaps one is taking a toxic drug. Anti-biotics annul it for me.) Cost – 1 euro the dose, 1 or 2 doses will stop a sore throat, 6 doses maximum treatment over 3 days ($8).

7. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist may help.)
Be moderate in terms of your current condition. Don’t do so much that you throw yourself into an « attack ». (Early on I stressed myself with a « performance » mentality.) Now I walk a minimum number of steps per day and swim when I can.

Be creative. Tif of ThisisMS.com has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body S haping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (www.secretosdelaesclerosismultiple.blogspot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm
Has thanked: 3 times

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

Post by AmbiCat » Mon Apr 29, 2019 9:47 am

NHE wrote:
Mon Apr 29, 2019 12:37 am
I was symptom free for 8 years after my first attack and my second attack led to my diagnosis. As far as medication goes, I could have taken anything for those 8 years and, if I had, I likely would have concluded that the medication was really helping me. However, being symptom free for 8 years was just the natural course of the disease for me. I hypothesize that I would have done better by changing my diet, e.g., reducing sugar consumption, increasing omega-3 oil intake and eating more veggies. Many of the DMDs have fairly strong side effects. Once diagnosed after my second attack I chose to go on IM interferon-beta for 10 years. The side effects were horrendous for me. In my opinion it would be unfortunate for someone with CIS to go through that. A diagnosis of CIS is essentially the doc's best guess that a person has MS except that it's just their first attack so there is some doubt. Why get labeled as MS and go through all those side effects if it's just "a best guess" based on current symptoms and MRI results? Moreover, many of the DMDs are ineffective at slowing the long-term progression of disability. See Dr. George Ebers' video.
That's actually really helpful and reassuring. I doubt I can expect to go a whole 8 years before another episode if this is MS, knowing my luck, but it's useful knowing that it really doesn't make a whole lot of difference in postponing the damage. I've read mixed info on how effective/worthwhile it is to go on medication after a CIS event - some sources say it can delay damage, but some also say while it CAN, there's little research to prove it has a whole lot of effect. I don't think I'd risk it after reading up on the side effects of these meds, unless one of the tests shows a definitive diagnosis.

I do know I'm more at risk for MS considering there is damage on my spine (unless info has changed, it's 60%+ chance if you have lesions but only 20% if you don't - a lot of studies seem to be 5+ years old at this point), but avidly waiting for the brain MRI this week to see if there's a second location of damage.

Neurologist is pre-emptively scheduling 3 days of IV treatment later this week in case the symptoms aren't gone tomorrow (last day of oral steroids) - they've much improved since Saturday, but no improvement from yesterday to today. I'm back to where I was on Wednesday or so - which was the 5th day of symptoms - aside from much more physical exhaustion than I had before.

In any case, I'm happy I'm at least improving some, albeit still nervous about a future diagnosis, but getting back to work sooner rather than later is a distinct probability, so that's helping perk me up a little.

ElliotB
Family Elder
Posts: 1815
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 2 times
Been thanked: 13 times

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

Post by ElliotB » Mon Apr 29, 2019 11:02 am

"I doubt I can expect to go a whole 8 years before another episode"

Actually for most with MS this is not necessarily unusual. And fortunately there is a lot you can do to improve your chances of this outcome.

User avatar
NHE
Volunteer Moderator
Posts: 5131
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 14 times
Contact:

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

Post by NHE » Tue Apr 30, 2019 12:57 am

ElliotB wrote:
Mon Apr 29, 2019 11:02 am
"I doubt I can expect to go a whole 8 years before another episode"

Actually for most with MS this is not necessarily unusual. And fortunately there is a lot you can do to improve your chances of this outcome.
Indeed! The lipoic acid trial by Oregon Health & Science University found a 68% reduction in brain atrophy in SPMS. In comparison, Ocrevus yielded just an 18% reduction.

https://www.medicalnewstoday.com/articl ... 5.php?iacp

ElliotB
Family Elder
Posts: 1815
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 2 times
Been thanked: 13 times

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

Post by ElliotB » Tue Apr 30, 2019 4:23 am

Interesting study! I don't think I had seen this before but actually had started taking R-Alpha Lipoic Acid, 300mg daily, about 6 months ago. But I am now going to up my dosage to what was used in the study.

It is important to know that there are two forms of Lipoic Acid, R-Lipoic Acid and A-Lipoic Acid. Alpha-lipoic acid consists of a 50/50 mixture of the R- (natural) and S- (unnatural) forms (enantiomers). ... R-Lipoic Acid is the form of lipoic acid that occurs naturally in plants, animals and the body and is responsible for the specific beneficial effects of alpha lipoic acid. I only use R-Lipoic Acid. It is a bit more expensive (and not that expensive) but IMHO worth it. It is also available in pharmaceutical grade (no fillers) from a company called Premium Supplements (available on Amazon of course).

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm
Has thanked: 3 times

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

Post by AmbiCat » Wed May 01, 2019 6:34 pm

Well, the symptoms weren't gone with the oral steroids, so I started 1g IV prednisone today.

Is it normal for symptoms to become seriously exacerbated after a high dose of that, for at least the first day? They hadn't made any improvement since Sunday (last dose of oral was yesterday, Tuesday), but they hadn't gotten worse again. Now one of my hands is almost unusable again, almost completely numb and muscles barely working, and I'm having trouble walking on the same leg again.

I'm getting so tired of this numbness and losing control of my body. I just want it to end. >.<

Nice to hear that some people can go a long time without exacerbation after CIS though! I was under the impression that it usually progresses to an MS diagnosis within a year or two (if it does).

User avatar
NHE
Volunteer Moderator
Posts: 5131
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 14 times
Contact:

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

Post by NHE » Wed May 01, 2019 8:05 pm

AmbiCat wrote:
Wed May 01, 2019 6:34 pm
Well, the symptoms weren't gone with the oral steroids, so I started 1g IV prednisone today.

Is it normal for symptoms to become seriously exacerbated after a high dose of that, for at least the first day?
In my experience, MS patients in the midst of an exacerbation typically report feeling better with IV prednisolone. The corticosteriod has a strong anti-inflammatory activity via inducing the white blood cells to die off by a process called apoptosis (cellular suicide).

Note that chronic use of steroids can make your bones brittle and weak. They also don't affect the long-term outcome of MS. They're used primarily to shorten the duration of an attack.

What other conditions have you been tested for? There are several which can mimic the symptoms of MS.

User avatar
Scott1
Volunteer Moderator
Posts: 1467
Joined: Wed Oct 22, 2008 2:00 pm
Been thanked: 7 times

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

Post by Scott1 » Thu May 02, 2019 2:15 am

Hi,

Are they doing any more MRIs?

The IV stuff can be a bit odd sometimes. The last time I had it (5 years ago) it played havoc with my blood sugars. I was in hospital for 3 and a half weeks which is unusually long. Post the three days on the drip I had this very weird feeling of weakness as though I was about to faint. A very experienced older nurse just grabbed some apple juice for me and within 30 minutes I felt much better. It was a side effect of the prednisolone. Its hits like a wave but its not nice. The apple juice helps.
This does settle down after a few days if you get it.
As you have already had an oral dose, it could be that. The oral variety does upset your stomach and general senses.

Regards

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm
Has thanked: 3 times

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

Post by AmbiCat » Thu May 02, 2019 3:34 am

Yeah I've taken Prednisone oral before and had no issue (for asthma) even with my GERD. The Dexmethasone was a little more rough on my stomach over the weekend, but the IV Prednisone did make me queasy yesterday, and really drowsy.

As for ruled out conditions, they've tested everything at this point that could cause it, including Lyme's, Syphilis etc. It's definitely down to either a virus that attacked my nervous system or the beginning of MS - neuro has no other options for what it could be. Bloodwork didn't show signs of an active infection though, so I'm not sure if that would've been elevated still if it was a passing virus, or if these symptoms can start after a while of the virus actually happening (he did say sometimes all you notice from those is just a barely-there sniffle or other minute sign that you might not notice the symptoms of but is a passing virus).

The MRI for my brain is just waiting on approval from insurance at the moment. Hoping to get it done either today or tomorrow. Not sure if he's going to go ahead with the spinal tap after or if he'll wait till he gets the results tomorrow/next week.

I'm just thanking the hell out of my neurologist's office at this point. It's a small practice (he's the only doctor there), but they've been on the phone a lot every day trying to rush approvals and get urgent appointments or tests scheduled, as well as him calling me at least once a day to check in on the symptom progress.

Body isn't QUITE as bad as last night, but my right leg's still dragging and my right hand is still very hard to use and numb. Left hand and leg are about the same as yesterday.

User avatar
dmt1972
Newbie
Posts: 3
Joined: Sun May 05, 2019 2:52 am

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

Post by dmt1972 » Sun May 05, 2019 5:34 am

Newbie here in the limbo stage too, but just wanted to reach out to you and let you know you are not alone!

Much Love,
Dawn

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm
Has thanked: 3 times

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

Post by AmbiCat » Wed May 08, 2019 1:43 pm

Update:

Had my brain MRI this afternoon, and the neurologist called tonight to let me know that there were a lot of lesions on it. Some were brand new and lit up, but he didn't know how old the non-lit ones were, just that they're newer than 4 years, since my brain MRI in 2015 was clean.

He can't definitively say that I've had an episode before now due to not knowing the age of the darker lesions, but he's confident enough that he wants to start me on MS medication - either Copaxone or Tecfidera.

I was really hoping that it would be one of those post-viral syndromes that we were all hoping for, but since the leg tremors are back today after being gone for days (and the numbness has never fully gone away even after the IV steroids), I kind of had a feeling that wasn't the case.

User avatar
Scott1
Volunteer Moderator
Posts: 1467
Joined: Wed Oct 22, 2008 2:00 pm
Been thanked: 7 times

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

Post by Scott1 » Thu May 09, 2019 1:44 am

Hi,

Sorry to hear this.

There will be a series of steps that your neurologist will guide you through. You might find yourself asking "is that it?"
As you get a handle on where you are, feel free to ask questions or seek second opinions.
I've been diagnosed since 1994 and many others here have long experiences they can share. It's not all downhill. Most people are remitting relapsing so you could have a lengthy recovery from here. A lot will depend on how you approach life from now on. Diet and exercise are just as important as drug therapies, if not more so.
Others will undoubtedly make suggestions but I suggest you take time to consider whether each piece of advice makes sense to you. You're at the start of a learning curve.
Regards,

User avatar
NHE
Volunteer Moderator
Posts: 5131
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 14 times
Contact:

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

Post by NHE » Thu May 09, 2019 2:27 am

AmbiCat wrote:
Wed May 08, 2019 1:43 pm
Update:

Had my brain MRI this afternoon, and the neurologist called tonight to let me know that there were a lot of lesions on it. Some were brand new and lit up, but he didn't know how old the non-lit ones were, just that they're newer than 4 years, since my brain MRI in 2015 was clean.

He can't definitively say that I've had an episode before now due to not knowing the age of the darker lesions, but he's confident enough that he wants to start me on MS medication - either Copaxone or Tecfidera.
In order to help you make an informed decision, you may wish to read through the prescribing information for these two DMDs. When I was diagnosed, I went through each of the prescribing information documents for the 3 drugs that were available at the time and looked up every word I didn't know in a medical dictionary. I wound up knowing things about the meds that my doctor didn't know.

Copxone, Tecfidera

You may also wish to watch Dr. George Ebers' video where he discusses the lack of efficacy of several of the DMDs in preventing long term progression of disability. At the very least, it may prompt you with some questions for your doctor.

https://www.youtube.com/watch?v=OqY-_K1fYJY

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm
Has thanked: 3 times

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

Post by AmbiCat » Sat May 11, 2019 12:11 am

NHE wrote:
Thu May 09, 2019 2:27 am

In order to help you make an informed decision, you may wish to read through the prescribing information for these two DMDs. When I was diagnosed, I went through each of the prescribing information documents for the 3 drugs that were available at the time and looked up every word I didn't know in a medical dictionary. I wound up knowing things about the meds that my doctor didn't know.

Copxone, Tecfidera

You may also wish to watch Dr. George Ebers' video where he discusses the lack of efficacy of several of the DMDs in preventing long term progression of disability. At the very least, it may prompt you with some questions for your doctor.

https://www.youtube.com/watch?v=OqY-_K1fYJY
I did watch that video before. It's pretty informative. Also looked up studies and information on several MS meds, and I agree with my neuro that I'd rather go on the more aggressive medication.

He is going to try to get an exception from my insurance to get me on Tecfidera, but if they refuse I'll have to go on Copaxone until (if) that's considered a failure. He's going to refuse to put me on any of the Interferons if Copaxone does get considered failed, given my history of depression, so the insurance company won't have a choice despite usually requiring me to fail two different drugs between the Interferons and Copaxone before they'll cover any other MS medication. My depression has always had dips throughout my life despite medication, so it's a risk none of us want to take.

He said that it's still possible that it's a post-viral reaction, but he doesn't think it's likely after seeing my brain MRI, and that's something we may not get definitive results on for even a few years - so for the sake of treatment from insurance, he's calling it MS. I'd rather be safe than sorry, even if a lot of the drugs have side effects (Copaxone really doesn't have much, yes, but ~30% effectiveness vs ~50% effectiveness, I'd rather take my chances with the Tecfidera if I can).

Seeing the MRI yesterday was actually pretty terrifying. I wasn't prepared for the number of lesions I have. My brain looks worse than swiss cheese right now (honestly, I couldn't even count how many lesions there were), and it was completely clear 4 years ago. 4 spots are brand new as of when the MRI was done on Wednesday, but the rest we don't know how old they are.

Thanks for being so supportive through this whole thing and feeding me information, guys. I really appreciate it, even if the outcome wasn't what I'd hoped. :roll:

ElliotB
Family Elder
Posts: 1815
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 2 times
Been thanked: 13 times

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

Post by ElliotB » 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.
Last edited by ElliotB on Sat May 11, 2019 3:17 pm, edited 2 times in total.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post