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Old 02-13-2012, 07:30 AM   #1
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How do you know MS is progressing?

My husband to be has been diagnosed with MS in Oct '11 after having double vision. His MRI showed 3 lesions.

He also had experienced numbness in his foot around mid July '11 but we do not know if it was due to MS or not - he also has slip disk.

His double vision went away after 3 weeks and after treatment with steroids. He was immediately put on Avonex and has been taking it since.

He had his second MRI in January and this showed - a significant decrease in lesion load, one of the lesions disappeared but there was the appearance of a new lesion.

what does this mean? is his MS progressing? what type of MS does he have?

Your insight on this would be very helpful

 
Old 02-13-2012, 07:37 AM   #2
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Re: How do you know MS is progressing?

HI. Try not to worry, okay? If your husband has been put on Avonex, he has relapsing/ remitting MS; and 85% of people diagnosed have this form of Multiple Scerlosis. Not everyone progresses by the way, and what he is dealing with now, could be as bad as it gets forever! Ive had Relapsing/ remitting for almost 7 years now and have not had a single new symtom.

The next thing you need to know is that until he has been on Avonex for at least 6 months, it is just beginning to work....it takes that long for the drug to build up in the blood stream, so right now, he is only beginning to get the benfits of the drug. I started out on Rebif, which is ultimately the same drug, given 3x a week instead of once a week- and into month 3 I had a horrible relapse, with some blindness...I was positive it wasnt working; however at my 6 month MRI, it didnt show any changes and other than that one bout of Optic Neuritis, I have never had another scare...so he is on his way to having some benefit from using Avonex now....remember though, nothing is guaranteed- he still may have occasional relapses or occasional symtoms, the point of the drug is to slow progression, maybe even stop it- but its not an exact science.

You will know if he is progressing because new symtoms wil show up and new lesions will be seen on the MRI. Having one or two, means absolutely nothing; however a severe symtom change- gait or walking issues, continual eye issues, changes in where he is numb or how it feels or how long it lasts, things like that should be discussed with his doctor. Avonex is not the strongest of the DMDs and there are others he could change to...right now, what you are describing is perfectly normal for someone who has only been dx for a few months....

I know its really scary when you are first (when your husband is) diagnosed and everything seems like a BIG DEAL. But as time goes on, he and you will get used to seeing that minor things come with MS, and symtoms come and go and it doesnt mean anything....its when the symtoms become hindering to your quality of life, or actually change his ability to be independent that things get alittle hairy! He is no where near there and heres hoping he will never be!

Try to relax and take this one day at a time...it does get easier as time goes on. I promise.
Nikki
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Old 02-13-2012, 07:51 AM   #3
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Re: How do you know MS is progressing?

Hi Nicky

thank you for your very quick reply. The fact that someone who is going through it can explain further is very helpful.

I did not know that Avonex takes 6 months to start working. I thought is starts working immediately.

Yes right now everything is a big deal and I am being paranoid however it is because we have not met the neuro as yet after the MRI so we do not know what his reaction will be.

How do you know that MS is progressing? Does it have to do with lesion load? How is it measured?

Thanks!

 
Old 02-13-2012, 11:15 AM   #4
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Re: How do you know MS is progressing?

MS is a progressive disease. Your husband will experience cycles of problems. He should also try to find his triggers (dietary, environmental, etc) which can bring out his symptoms. If he can control-avoid-eliminate these triggers, he may find he has fewer problems. His triggers will likely be unique to him. One of mine is high temps and low temps. Among my uncontrollable triggers is seasonal changes. For the uncontrollable triggers, they will happen, but he will get through them.

BTW, I have been through vision loss. I call it my journey into the night. I have always got my eye sight back. I have had light sensitivity problems with my right eye since 2002. I use polarized sunglasses as my defense for my eye. If I go without my sunglasses, my right eye will close and I start to develop pain behind my right eye.
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Last edited by MSJayhawk; 02-13-2012 at 11:18 AM. Reason: Add

 
Old 02-13-2012, 02:16 PM   #5
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Re: How do you know MS is progressing?

I also want to add that not everyone progresses. Many people have only one or two symtoms their entire life with MS......those of us who are fortunte enough to have been able to take a disease modifying drug (DMD) such as Avonex or Rebif- generally have a better chance at controlling the disease. The purpose of those drugs is to prevent further attacks on the system. No more attacks would mean no further progression. Of course, as Jayhawk stated, overall , MS is a progressive disease; however that can mean alot of things...it can mean as the years go by, the patient will experience more bad days more often.....OR it can mean that right now, your husband is incredibly mobile, able to walk unassisted, but eventually may need a cane or even a wheelchair for support....(only half of MSers actually use a wheelchair). It might mean that he can go for years without a change in his status, but as he progresses, he starts having some bad days, days where his fatigue is overwhelming, or his balance is terrible, or even those days when nothing is really clear and his vision is off- but with relapsing remitting MS, those attacks are usually short term. And, mostly they remedy themselves 100% in the beginning, and as time goes by (years and years) sometimes- that becomes lesser. You might only recover 90% or 75% instead of 100%. But, this is getting WAY TOO FAR AHEAD OF YOURSELF.

MSers lead perfectly normal lives, they just have to make some changes. Like Jayhawk said, heat and tempterature changes affect me. I have more numbness, more pain, more muscle spasticity when the weather changes- heat makes me stupid. Cognitively impaired...but I could live naked in the winter and the cold doesnt bother me. I dont even feel it.

In the years since I have been diagnosed, I went to college, did my undergrad a bachelors a MBA and now am working on a doctorate. I work 60 hours a week and travel for my job. I have a family and kids.....there is nothing I cant do! You cant let MS scare you. You have to take control of it and your husband is doing exactly that by staying on his injection.

I know its scary. I remember it well! The first year, everything is overwhelming, everything feels like MS....a simple cold feels like a relapse- the flu feels like Avonex symtoms...but its not all MS..some of it is just being a normal person getting sick. It takes time to identify what is serious and what is normal.....which is why its really important to get to know your doctor and his nurse and have a support system. You have one now- US! And, we will always listen and help you through the questions and tough times....(but you DO need your doctor as well). Youre going to have to believe me when I say it will get easier....and in the meantime, stop worrying about what progression looks like...there is no answer to that. Yes, progression is caused by more lesions and there is only a 50-50 chance that drugs like Avonex prevent new lesions- but 50% is better than no percent. AND Not everyone progresses, remember that!

Hang in there.....this wil get easier to deal with and remmeber, MS is a very livable disease.
Hugs,
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Old 02-22-2012, 06:03 AM   #6
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Re: How do you know MS is progressing?

Hi

Thank you for your messages and please excuse my delay in replying but I could not do so before.

We have a neuro appointment in 2 weeks time, what do you suggest that we should ask - it is our first appointment and I want to make the most of it.

Moreover, are all MSers effected by heat and if so can it be that it is not effecting him for now?

Another question would be your thoughts about diet and low fat - what are your views?

Sorry for the multiple questions but your experiences are really helpful and reassuring.

Thanks.

 
Old 02-22-2012, 06:56 AM   #7
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Re: How do you know MS is progressing?

I would print out the Revised McDonald Criteria and use it as a checklist for your neuro visit.

Heat can still affect an MSer in the winter. I wear layers which I add or subtract depending on my body. Even with the thermostat set low, I can still overheat at night. Like the daytime, I have layers of bed covers which I can add. Most nights anything more than one layer of a cotton quilt and I will overheat. Each MSer is different. A hot shower or bath can cause problems too. Heat intolerance is not 100%. Some MSer's are never bothered by heat, but it is a predominant shared problem for most. Heat intolerance levels can also vary. This is something that you can determine easily if you keep records regarding air temps and symptoms.

As to diet and exercise, discuss these with your neuro. They can have you consult with a nutritionist. Exercise must be done in moderation. Stretching is important to maintain tone and muscle memory. Low impact exercise such as tai-chi or yoga or pool therapy are good. Much of it depends on the MSer. Even with MS, I was able to enjoy power lifting until it became unsustainable. I had to modify some of the lifts and I used equipment with safeguards. Many of the MSer's activities will need to make sure that moderation is key and that individual safety is maintained.
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Old 02-22-2012, 06:42 PM   #8
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Re: How do you know MS is progressing?

I think you should be asking the doctor about monitoring the avonex..make sure he is having blood work every 4 months or so- it can affect his liver. I also think you should be talking to him about symptom management. Is there any symptom which is particularly upsetting to your husband which might be managed. Is your husband still working? Disability is not prevelant, but is always a possiblity, this is something that you and your doctor will have to fill out forms on and work on together...if this isnt the case, then talk to your doctor about whether or not he feels you should be concerned about it for the future. I can tell you that 95% of the MSers I know, work fulltime and have/ raise families, without missing a beat- I do both of those and go to grad school where I am a straight A student....so dont let the "what ifs" throw you off, it may never happen.

As Jayhawk said, heat doesnt affect everyone....but it is prevalant in the MS world. I cannot take a hot shower and blowdry my hair without getting dizzy and anxious...I definately cant stay out on a hot humid day unless I have a cooler around my neck and my feet in the pool. I love to vacation in the carribean, but I spend my entire time in the ocean or pool. I cant site see on a hot day! I also live in NJ, where we have some of the highest humidity in the country....it affects me badly. My vision can be thrown off, my balance gets bad and my neuopathy increases when the humidity rises. I could live in alaska naked and not feel the cold...go figure.

You might talk to your doctor about having your husbands eyes checked by a Neuro-opthamologist regularaly. If he had optical neuritis, it can come back.....they should do visual field tests once a year to check for vision loss- and sometime they add in an orbitol MRi when they do the brain to check for damage to the eyes... these are all good things to bring up. Lastly, Id be asking him how long your husband can stay on Avonex. Most docs are now recommended no more than 7 years. I didnt quite make it to 7 when the interferon bit me in the behind. I developed antibodies, which caused me more problems that just having MS.....so keep that line of communication open.

Youll know what to ask when you talk.....anything you dont understand, make sure you ask for clafiication. And, ask the doctor "when " you should call, what consitutes an emergency in his eyes....because the first year, in YOUR eyes, everything wil seem like an emergency...trust me, 75% of it wont be...but in case it is, you need your doctors guidelines...

Best to you both....let us know how it goes.
Nikki
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Old 02-23-2012, 12:24 AM   #9
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Re: How do you know MS is progressing?

the symptoms he had till now were numbness in his foot in Jul '11 and double vision in Oct '11 which have seemed to have resolved themselves after around 3 weeks each, though he did have lingering symptoms which took longer to resolve themselves linked to the double vision e.g. disorientation . So his functionality is still very much as it was before.

He does seem to have become much more anxious, he is worrying about little things all the time - can this be caused by MS?

Re heat... we have to see next summer... I am a bit concerned as Malta is very hot and very humid - we will see how it goes.

What do you mean when you say that avonex caused you additional problems?

Also do you know whom I can speak to about travelling with Avonex?

Many thanks

 
Old 02-23-2012, 06:26 AM   #10
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Re: How do you know MS is progressing?

You will probably find that many symptoms will cycle through as he has experienced. Stretching is important for "muscle memory" as to prevent atrophy. Make sure he stays well hydrated.

Malta may be a bit too much. During my summers I generally remain indoors from about 10:00 until late in the day. Though not too much fun, you can still do many things in Malta.
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Old 02-23-2012, 07:40 AM   #11
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Re: How do you know MS is progressing?

he started going to the gym 3 times a week. Which is very good for him. He also takes fish oil supplements and I give him saffron everyday as i read that it helps the nervous system and he takes Avonex every week.

Yes, we will see how it affects him. Till now hot showers and the heat whilst at the gym do not seem to be affecting him. Fingers crossed...

 
Old 02-23-2012, 09:52 AM   #12
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Re: How do you know MS is progressing?

Consuming Omega rich foods such as nuts and fish would be better than supplements, I think. A word of caution regarding saffron: Too much of Saffron causes deathly narcotic effects and they prove to be sedative. They may also induce abortive effects. Overdose may lead to vomiting, nose bleeding, confusions, jaundice, worsen asthma, mood fluctuations, excessive spending, rapid speaking and utrine bleeding. There are traces of allergic symptom found in some people. When tested on animals they show low biochemical reactions. Whatever supplements he is taken need to be made known to his neurologist. My suggestion is to save your money on supplements and implement a diet with good nutrition.

For Omega rich diets, you can pull up threads previously posted on fish and nuts or you can also find them on the internet. As you mentioned travel, please be aware that not all supplements are permitted in every country even for personal use. You should check with the country to which you plan to travel or even transfer flights to confirm this.
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Old 02-23-2012, 04:40 PM   #13
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Re: How do you know MS is progressing?

Traveling with Avonex is very simple. You put it in your carryon bag, and you carry a prescription, you can rip the label off the box from the shipment of drugs, and a letter from your doctor which states patient needs to take Avonex or carry Avonex syringes for the treatment of MS. The TSA cannot prohibit you from bringing them on a flight- also, Avonex can be left out , unrefrigerated for up to 7 days, so you do not need to pack it in ice...

As far as what happened to me, I developed antibodies to the Interferon...the drug was actually making me sick. I developed melanoma, and had many surgeries to remove chunks of melanoma on my skin- I have 6 nice scars, caused by taking interferon. I also developed some viruses which took many rounds of IV antibiotics to clear up, and along with that came yeast infections and thrush...I was a basketcase for almost 6 months before they realized that each shot I did was making me sicker and sicker....

Shortly after stopping the shots I returned to my "normal" self, with a few battle scars. i consider myself lucky, it only would have gotten worse if my doctor hadnt checked for antibodies......within weeks of coming off the interferon, I started to feel amazing. I have remained stable and feelling great ever since. I am taking LDN.....which is low dose naltrexone. Used on Europe and Australia, its an oral drug used for MS treatment, but not approved in the US for such. I have to get it offlabel...

I think you and your husband are on the right track. I would stop the saffron and stop believing what you read- there is much evidence that supplments are NOT the way to go, especially for MSers as many of them stimulate the immune system. Jayhawk is right- a healthy diet is a much better way to go. Other than that, yes, having (hearing) that you have MS is very stressful the first year, as time goes on, your husband will start to relax- and things will be more normal to him, but he is going to worry about everything in the beginning....its normal. He needs to adjust to this news and process it. After one year, he will realize that "nothing" has changed...and he will start to relax. We have all been there, and I feel for him...get him on these boards! We will walk him thru it!
Hugs,
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Old 02-25-2012, 03:06 AM   #14
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Re: How do you know MS is progressing?

Regarding diet, is there anything you think we should stay away from? or eat more of? He really loves cooking and eating so this is a delicate subject for him.

 
Old 02-25-2012, 08:07 AM   #15
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Re: How do you know MS is progressing?

there is nothing he cant eat...as long as you are basically sticking to a heart healthy diet. Everything in moderation. Cut out unnecessary fats and red meat (limited). Increase fruits and veggies, simply because of nutirent value. If he has any neuropathy, tingling, numbness- things that are called nightshade veggies (eggplant, tomatoes) can increase inflammation....Im italian, 90% of my cooking involves tomatoes..I try to eat less than 3 times a week, but I do notice when I eat a TON of tomatoes, I do have additional numbess/ tingling....this isnt harmful, just aggravating.
Tell him to eat and enjoy.
I promise you- one year from now you and he will look back on this and realize nothing has changed....all this worrying was for nothing. BUT I can also assure you that each and everyone of us went through the scared feelings of "what if". What you are asking about is normal.....but in the end, a waste of your energy. Focus on NOW, and dont worry about tomorrow. He is not going to change anything overnight.....he may NEVER change....so enjoy today.
Nikki
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