Multiple Sclerosis

[nickbits]

Anyone have it or know someone that has it? How are they doing?

I more or less have been diagnosed with it ("it is highly unlikely it is anything else") and they recommend I start drug treatment to delay the disease progression. Treatment involves self injection of medication multiple times per week (frequency depends on the drug).

Do you know anyone on any of the drugs (Avonex, Rebif, Copaxone, etc)? What has been their experience with them? I have a 10lbs stack of literature sitting on my desk which I haven't been able to face opening yet.

So far I have seizures (mostly simple partials and had one tonic–clonic), chronic pain and ptosis (drooping) in my left eyelid. I've had the ptosis for 17 years and it may or may not have been caused by MS. Seizures started last year. So far no motor problems (excluding my eyelid thing).

I also just got married last year and not sure I would have no given the outlook.

I'm mostly just ranting. It is easier to do where no one knows/cares about me.

/blog

 

[highland145]

Sorry to hear.

This may be an anonymous forum but that doesn't mean that we don't care.

 

[janas19]

Sorry to hear.

This may be an anonymous forum but that doesn't mean that we don't care.

Aye. Caring is felt.

 

[Whisper]

Many of the people with whom I've worked have had large degrees of success with the medications, although sometimes it takes a little time to get the right combination and dosage figured out.

 

[marmasatt]

Aye. Caring is felt.

Agreed. I'm sorry to hear. I don't know much about it other than the exacerbation and remission. Basically it ebbs and flows. I know a few people with it and sometimes they're good as new and sometimes they have trouble even walking. But that is very gradual over time I believe as well.

 

[Azraele]

Sorry to hear the news. I know it sounds scary, but it can be managed and the progression is very very slow. Don't let it get you down, and don't think for a second that you should not have married because of it. Every marriage faces it challenges and you can still have a long and happy life with your spouse.

 

[OILFIELDTRASH]

I had an ex girlfriend who's mom had it. She was in her 40's and still doing well. You can still live a full happy life just a few more obstacles than you had thought.

 

[GuitarDaddy]

My wife was diagnosed with it when my Son was born 22 years ago, she has the chronic progressive type (not the exacerbation/remission type) and her type doesn't respond to the conventional treatments like Avonex. She basically takes pain killers and muscle relaxers. She is 49 and still walking but she has no stamina and can't go very far, stuff like walking around a mall is out of the question for her.

The scariest part for her is it occasionally effects her eyesight and also causes heart fibrilations. She has had two spells over the years where she completely lost her eyesight for a period of time, once for 15-20min and another time almost two hours. THAT was really scary.

But the upside of the story is she has lived with MS for well over twenty years and still leads a fairly normal life except for the limited mobility

 

[SociallyChallenged]

Well, there are several differing forms of MS that range from relatively tame to very severe. It's a pretty broad spectrum. It's interesting that they're diagnosing it by exclusion. Have you had any nerve conduction velocity tests done by a neurologist? Have you seen a neurologist? That will give a lot better, inclusion data.

Honestly, MS can vary quite a lot, but simple things you can do to alleviate the symptoms are light exercise - both weightwork and cardio, eat very well (anti-inflammatory diet extremely high in veggies, some fruit, no processed foods, lean meats, nuts, etc), take fish oil, and make sure you manage your stress well. Both physiological and psychological stress can lead to flare-ups so you need to avoid things like over-exerting yourself, spending too much time in the heat, working too hard, procrastinating, etc.

TBH, MS typically doesn't manifest within the cranial nerves (CN III is responsible for the levator palpebrae superioris, which is why you have ptosis). It's a central nervous system problem that results in sporadic sensory and motor detriment. As I said before, if you haven't already, see a highly recommended neurologist and get some more testing done. There are many other neurodegenerative conditions that it could or could not be. Each one manifests and is treated a little differently.

 

[Whisper]

Well, there are several differing forms of MS that range from relatively tame to very severe. It's a pretty broad spectrum. It's interesting that they're diagnosing it by exclusion. Have you had any nerve conduction velocity tests done by a neurologist? Have you seen a neurologist? That will give a lot better, inclusion data.

Even with nerve conduction tests, exclusion is pretty much the main way MS is diagnosed (to an extent), as it essentially just becomes a combination of a variety of "yes" symptoms over time in the presence of other exclusionary findings. I'd be surprised if they didn't grab an MRI or two before attempting to finalize the diagnosis, though.

 

[SociallyChallenged]

Even with nerve conduction tests, exclusion is pretty much the main way MS is diagnosed (to an extent), as it essentially just becomes a combination of a variety of "yes" symptoms over time in the presence of other exclusionary findings. I'd be surprised if they didn't grab an MRI or two before attempting to finalize the diagnosis, though.

Yep. After I posted, I remembered the diagnosis via MRI - must have two lesions visible in the one MRI or one lesion on two different MRIs (different locations). I've learned quite a bit about the neurodegenerative diseases, but I haven't had to apply it that much so I tend to refer to my notes. Didn't have them available when I first posted. MRIs are definitely the stronger tool for diagnosing MS.

 

[eersnherd]

Ok, I'm officially spooked.

I have ptosis of the left eye, right if you are looking at me.
Essentially one night I went to bed with a "cluster headache" while laying on a heating pad and awoke with the drooping eyelid. Some call it Horner's syndrome.

Beyond that, I'm wearing a wrist splint at night for a new tingling in my right fingers. They feel numb from time to time and seem to feel better when I wear the splint. Carpal tunnel was the diagnosis for that.

I did a DNA test through www.navigenics.com and found I have 4 of the 6 genetic risk markers for MS.

I am hoping not....best wishes on your dx and maintenance.

 

[SociallyChallenged]

Ok, I'm officially spooked.

I have ptosis of the left eye, right if you are looking at me.
Essentially one night I went to bed with a "cluster headache" while laying on a heating pad and awoke with the drooping eyelid. Some call it Horner's syndrome.

Beyond that, I'm wearing a wrist splint at night for a new tingling in my right fingers. They feel numb from time to time and seem to feel better when I wear the splint. Carpal tunnel was the diagnosis for that.

I did a DNA test through www.navigenics.com and found I have 4 of the 6 genetic risk markers for MS.

I am hoping not....best wishes on your dx and maintenance.

The headache and numbness could all be related. Cervical spine dysfunction can lead to nerve symptoms in the upper extremity. In addition to this, a very painful, long lasting headache or excessive stimulation to the neck can pretty easily lead to autonomic response. That, however, should not affect your eyelid, as that's related to skeletal muscle function, not smooth muscle function (which is what is affected by the autonomic nervous system). It might be best to talk to a doctor, maybe get some MRIs done. If you don't have MS, then it would be idea to pursue conservative treatment for your tingling - get a prescription for PT to address your neck or peripheral nerve dysfunction. That will definitely help, especially if you don't have MS.

 

[eits]

ms is often a diagnosis of exclusion. go see a chiropractor who also prescribes pt exercises or refers to a pt and see if it might be something they can fix. if you don't get any benefit after a trial period of care, see a neurologist.

 

[SociallyChallenged]

ms is often a diagnosis of exclusion. go see a chiropractor who also prescribes pt exercises or refers to a pt and see if it might be something they can fix. if you don't get any benefit after a trial period of care, see a neurologist.

Hm? This is something that he needs to see a neurologist first about. Period. After that, he can see whatever conservative treatment professional to improve function, reduce complications, educate the patient on detecting signs of stress, etc. That's not the first step though. Many times, MS has a set diagnosis, as determined by symptom description and MRIs. There's also genetic tests that can be done, etc. IMO, MS should not be a diagnosis of exclusion.

 

[eits]

Hm? This is something that he needs to see a neurologist first about. Period. After that, he can see whatever conservative treatment professional to improve function, reduce complications, educate the patient on detecting signs of stress, etc. That's not the first step though. Many times, MS has a set diagnosis, as determined by symptom description and MRIs. There's also genetic tests that can be done, etc. IMO, MS should not be a diagnosis of exclusion.

i think it's a matter of opinion, really. i've always thought that if a conservative approach doesn't work first, then you take it a level higher and see a neurologist. i had a neurologist refer me a patient who had ms and very favorable results. the patient told me, "i shoulda come and seen you first before wasting all this time and money with all these other doctors". this patient had no plaques visible on mri or anything, but had symptoms consistent with ms.

yes, i realize how ms is often diagnosed... many times it's just a diagnosis of exclusion. the chiropractor may refer to a neurologist anyway just to check for ms, especially if treatment hasn't helped.

 

[deadken]

Honestly, I haven't read the entire thread. I just stopped in for something else and saw this.

My Wife has MS. She was diagnosed over 20 years ago. Back then there weren't any drugs to treat it that I know of. A long time ago (15 or so years ago) she tried Avonex which IIRC was a once a week injection. But the flu like symptoms were so severe (lasting 2-3 days) that after a month or two she stopped and went on Copaxone (daily injection). She used that for the last 15 years or so, but recently started having more and more exacerbations. Each time requiring Solumedrol [sic] IV's. What a horrible time with her 'speeding' in the hospital and then having a terrible time after being sent home (as it left her system). Lately, she has started Tsobri [sic] which is a once a month IV. Again flu like symptoms (lasting about a week). She's had 3 Tsobri treatments and we are hoping that the side effects will start to lesson. I'll ask her if she wants to come on and talk about her MS here (under my login).

For what it is worth, a buddy at work told me his wife has MS. He said that the doctor said she won't ever be in a wheelchair because of where the lesions are. I have no idea if that could be true or not.

Good luck. It is not a death sentence. It's a slow progression, which with medications, could even be slower.

 

[Dulanic]

I have MS. I was diagnosed in 2003, http://forums.anandtech.com/showthread.php?t=1199652, and have lived with it since I was in my early 20's. I have been on multiple medications (explained below).

When I was first diagnosed I kind of had 1000 things going through my mind at the time. I can tell you first hand from my experience, the effect can be extremely variable. I, fortunately, have only had 2 relapses in 10 years and have been very fortunate.

I started in 2003 on Avonex. To be honest, this drug is a PITA. You have to self-inject into the muscle once a week. It also causes me extreme fly symptoms that felt like the worst case of the flu I had ever had. I was on this for a few months and then went off meds totally for a few more as I had lost a job and couldn't afford the medications.

In 2004, I had a relapse and made the decision to change to Tysabri. This was my miracle drug. I felt better than I had since my diagnosis. I had 0 side effects and it was a once a month medication. Unfortunately, it got pulled from the market in early 2005 and I had to change again.

I swapped to Rebif this time. Rebif is very similar to Avonex in that it is a interferon and acts very similar. The main difference is it was a 3x a week subcutaneous self auto injection. It also caused flu like symptoms like Avonex did. After 6 months on Rebif my MRI showed much more activity /w Rebif (8 active lesions) which indicated it was not working well. I was on this until mid-06 when Tysabri was brought back to the market with a black box warning about risk for PML.

I made the personal choice that the risk was worth the reward. I have been back on Tysabri ever since and I am beyond happy with it. My neurologist has changed me to 1 infusion every other month instead of every month to try to keep my risk lower. Based on the research they have done and my positive test for the JC virus, my current risk of PML is ~1 in 750 to get PML. This is higher than I would like, but it is worth it to me.

For now, I will keep an eye on gilenya. I have talked at length to my neurologist about this so far. My hope is that someone does a gilenya vs Tysabri effectiveness study soon. If the results are good, I may end up changing.

Anyways, I won't go on forever... if you ever need to talk to someone or have any questions, feel free to PM me.

To deadken:
The flu like symptoms with Tysabri is odd... that is not a common side effect for Tysabri at all. In fact, it isn't even reported as a minor side effect. The reason for the flu like side effects of a interferon is that it causes your body to attack the medication instead of the brain. As such, it mimics the flu as your immune system goes full force attacking the Avonex.

Tysabri blocks white blood cells from crossing the blood/brain barrier which should not cause those side effects. I would recommend that your wife pushes her neurologist more about this... Also, if she ever has any questions or concerns about Tysabri, she can always PM me also. I have been on Tysabri longer than about 99% of Tysbri users.

 

[Whisper]

Yep. After I posted, I remembered the diagnosis via MRI - must have two lesions visible in the one MRI or one lesion on two different MRIs (different locations). I've learned quite a bit about the neurodegenerative diseases, but I haven't had to apply it that much so I tend to refer to my notes. Didn't have them available when I first posted. MRIs are definitely the stronger tool for diagnosing MS.

No worries. And yeah, MS is an interesting case; even with MRIs, you're not always going to get a "definitive" diagnosis, as someone above mentioned (e.g., exhibiting symptoms but don't happen to catch anything on imaging).

I'm going to second SC's recommendation to see a neurologist if you haven't already. If you choose to go with PT/chiropracty/anything else afterward, that's fine, but even if you don't want to go with the treatment the neurologist prescribes, you're going to want to speak with one first for a variety of reasons (not least of which is to be sure that what you have actually is MS and not something else that could be "masquerading" as the condition via similar symptoms).

 

[nickbits]

I've seen 5 different neurologists at 3 different hospitals in 2 different countries. I've probably had over 20 different doctors looking at my case at one time or another. Mostly within the last year. I had some nerve conduction tests a few years ago and they were slightly irregular but nothing to worry about. I've also had 6 MRIs (3 this year) and a brain biopsy. Nothing conclusive.

My lesions are all in the grey matter. MS is normally in the white. They think I be the variant called "tumfactive ms" which is ms but looks like a brain tumor on scans. I'm leaning towards not going on any of the treatments at this point.

 

[Dulanic]

I've seen 5 different neurologists at 3 different hospitals in 2 different countries. I've probably had over 20 different doctors looking at my case at one time or another. Mostly within the last year. I had some nerve conduction tests a few years ago and they were slightly irregular but nothing to worry about. I've also had 6 MRIs (3 this year) and a brain biopsy. Nothing conclusive.

My lesions are all in the grey matter. MS is normally in the white. They think I be the variant called "tumfactive ms" which is ms but looks like a brain tumor on scans. I'm leaning towards not going on any of the treatments at this point.

Not going on any treatment is risky and is highly discouraged by most people. I personally know what happened to me during my times without treatment and the long term effects it had on me.

http://www.multiplesclerosis.com/html/documents/pdf/ms/Treatment.pdf

MS also tends to be more devastating to gray matter than white matter and if it being seen more in the grey matter, I would even be more wanting to get treatment if it was me.

http://www.sciencedaily.com/releases/2003/10/031022062049.htm
http://www.neurology.org/content/68/9/634

 

[SociallyChallenged]

i think it's a matter of opinion, really. i've always thought that if a conservative approach doesn't work first, then you take it a level higher and see a neurologist. i had a neurologist refer me a patient who had ms and very favorable results. the patient told me, "i shoulda come and seen you first before wasting all this time and money with all these other doctors". this patient had no plaques visible on mri or anything, but had symptoms consistent with ms.

yes, i realize how ms is often diagnosed... many times it's just a diagnosis of exclusion. the chiropractor may refer to a neurologist anyway just to check for ms, especially if treatment hasn't helped.

That's not appropriate at all though. MS is something that typically should be medicated and monitored regularly via imaging. Conservative treatment can help manage symptoms, but it doesn't tell us what's going on and what pharmacological interventions are appropriate to delay the disease onset. I completely agree that conservative care is appropriate and vital to treatment of MS. However, it must be done in conjunction with treatment by a neurologist to optimize the patient's safety, longevity, and overall quality of life. The conservative care professional - chiro, PT, trainer, etc - should be the secondary provider. The neurologist should always be the primary.

 

[nickbits]

Not going on any treatment is risky and is highly discouraged by most people. I personally know what happened to me during my times without treatment and the long term effects it had on me.

http://www.multiplesclerosis.com/html/documents/pdf/ms/Treatment.pdf

MS also tends to be more devastating to gray matter than white matter and if it being seen more in the grey matter, I would even be more wanting to get treatment if it was me.

http://www.sciencedaily.com/releases/2003/10/031022062049.htm
http://www.neurology.org/content/68/9/634

I don't think I can handle going on any more medication linked to depression. And copaxone has no effect on preventing disability, which would be my only reason to go on one of them.

 

[eits]

That's not appropriate at all though. MS is something that typically should be medicated and monitored regularly via imaging. Conservative treatment can help manage symptoms, but it doesn't tell us what's going on and what pharmacological interventions are appropriate to delay the disease onset. I completely agree that conservative care is appropriate and vital to treatment of MS. However, it must be done in conjunction with treatment by a neurologist to optimize the patient's safety, longevity, and overall quality of life. The conservative care professional - chiro, PT, trainer, etc - should be the secondary provider. The neurologist should always be the primary.

if it's ms, yes. but since there's nothing to indicate ms except for symptoms typical of cervical dysfunction, a trial of care would be a good way to go before getting a ton of tests done that may be inconclusive anyway. if the trial of care fails to yield subjective and objective changes, then the next step would be to see a neuro. but, then again, that's just my conservative opinion. a month of treatment isn't going to speed up his potential ms any.

 

[Dulanic]

if it's ms, yes. but since there's nothing to indicate ms except for symptoms typical of cervical dysfunction, a trial of care would be a good way to go before getting a ton of tests done that may be inconclusive anyway. if the trial of care fails to yield subjective and objective changes, then the next step would be to see a neuro. but, then again, that's just my conservative opinion. a month of treatment isn't going to speed up his potential ms any.

I don't see anything that indicates anything except MS. Based on the simple fact that he has been to so many doctors, and nothing else has been diagnosed I think it is kind of drilled down to MS. Also, the OP mentions "lesions" not 1 but plural which also indicates MS. It is always better safe than sorry as the earlier someone starts treatment the more potentional long term damage that can help be prevented.

The idea is to prevent as much damage now in hope that a cure is eventually found. The downside is most likely, if/when a cure is found it likely will only be able to prevent further damage and not repair old damage. Why risk it? What is the point? Tests can continue to be run etc.. while getting treatment.

To the OP, I understand the depression portion. However, I am confused where the issue comes in. The increased depression rates mostly has to do the the fact someone has MS, not that someone is being treated. Take Avonex or Rebif for example... it is a interferon which only effect it really has it causing your immune system to attack the interferon instead of the nerves. This has no inherent effect on depression.

Also, copaxone does have an impact, it helps lessen lessions which in turn helps lower replase rate and permanent damage to the nerves.

There are also other options like Gilenya which is a new oral drug which is known to be more effective than Avonex. I guess I know what it is like and I at times felt like medications weren't needed... but after experience I realize how wrong I was. I am not trying to tell you what to do, simply my opinion and my reasoning behind it. I strongly feel anyone who has MS or has a strong posibility of having MS needs to take DMT's (disease modifying therapy) ASAP. If it is ever found to be something else, someone can always come off a medication, but you can never go back and undo the damage that is being done if you're wrong.