My sister was just diagnosed

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My sister was just diagnosed

Postby Goldenme » Sun Nov 26, 2017 7:51 am

Hello, everyone. Came here looking for answers and support. My 55-year old sister has just been diagnosed with MS. She is not computer savvy and so would not go on forums like this on her own. I am really freaked out by her symptoms, which have been falling (total muscle failure), seizures, violent tremors, periods where she could not speak coherently, or walk. (but even on good days she uses a cane to walk). Thankfully, those episodes only lasted a day or less, then she feels better again. But she lives by herself, I am 45 minutes away, and I am scared for her. She was just diagnosed on Friday, and the doctor is insisting she see an MS specialist because of how her symptoms presented all at once as they did. Is that very unusual? He wants to start her on Tecfidara, but she needs to see a specialist first. I'm wondering if she will continue to be able to live alone or if I should think about moving the both of us to somewhere where we can live together so I can be there for her. I have a lot of other siblings but they live so far away. Thank you for any advice you can give me!
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Re: My sister was just diagnosed

Postby jimmylegs » Sun Nov 26, 2017 12:30 pm

hi and welcome to the forum. sorry to hear about your sis! i'm afraid there isn't much we can consider 'usual' with ms. it may be the case that signs and symptoms were lurking but unrecognized, until the wheels came right off leading to the recent dx.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: My sister was just diagnosed

Postby autumn9993 » Wed Nov 29, 2017 9:39 pm

Hi there,

Sorry to hear about your sister. MS sure can cause lots of stress for both the diagnosed and those who love them. Regarding MS symptoms, symptoms are very variable from person to person, there is no "one size fits all". I would suggest that your best bet when it comes to symptoms is to refer to the neurologist/neurologist's nurse. And yes, those with MS can experience good and bad days. Suggest to your sister to try and pay attention to things that may trigger her to have "bad" days, such as stress, infection etc. And sometimes, you just get a bad day and there is no explanation! But checking out common triggers for other people with MS is a good place to start so that she may find some ideas of what triggers her.

I would also suggest you speak to the doctor about the housing situation as well. If you believe that she is not safe in her house at the time, there are interventions that can be done to increase her safety, whether that means installation of grab bars etc. There is also an option of homecare which can be a first step for people. But again, I would speak to your dr about it to find out what types of services you have in your area. There are options like live in care givers, come-and-go homecare etc. that may be beneficial.

As far as if she will be able to live alone, that is really dependant on safety and if she is getting the care she requires. But there are more then just two options (as in living alone vs living in a care-facility). Also, it depends on how her MS progresses. MS is completely individual and as we dont have a crystal ball, no one can tell you with 100% certainty whether or not your sister will be unable to manage within her own home (whether thats with homecare or independently). Moving in with your sister is a personal decision which I cannot provide advice on, but I can say I would advise you to be aware of the services your sister could use before you need to use them - it makes the transition that much easier if it's needed.

Hope this helps a bit!
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Re: My sister was just diagnosed

Postby Scott1 » Thu Nov 30, 2017 1:27 pm

Hi,

What Autumn has said makes sense.

Given the rapidity of the onset of a whole clutch of symptoms I do agree that they should be looking for triggers that impact on her health. Look for mycoplasmas, chlamydia pn, EBV activation, a range of other herpes family viruses, vitamin deficiencies and any other infection that the doctor can think of.

To suddenly get MS at that age is a little atypical but still common enough. The question to clear up is whether other infections or problems contributed to the decline in her health. If that's the case, then fix them and you won't know that unless you check.

There are also elements of lifestyle that can impact. The successful diets all skip added sugar, they stay away from gluten and processed foods. Most protocols emphasis an adequate level of sleep. They are all little things that add up.

My own view is gentle exercise that strengthens muscles when they are elongated like Pilates makes a very big difference.

If you sister is not up to do her own research then perhaps you can do it for her. Then are many ideas in here that are based on personal experience and some work for some people. I am a strong believer that reading medical research eventually helps you grasp what is happening. It is also not easy at the beginning to follow.

Good books to start are works by Terri Whals and my personal preference is metabolic cardiology: The Sinatra solution by Stephen Sinatra. That books is about cardiology but the protocol has helped me enormously and you don't need a doctor to do it. As a result, I do not have fatigue at all. Outside the square is a good reference book by a herbalist, Stephen Harrod Buhner, Healing Lyme disease coinfections, which is surprisingly detailed.

Tecfidera is not the only option. Make sure they can say they have definitely checked for JCV. If they haven't then they aren't following the recommendations of the FDA and could be exposing your sister to more harm than good.

My guess is your sister is in for a tough time. Part of it is coming to terms with change. She will have to do that before she can consider what to do about it. She will need your help. Most likely, she will feel isolated and belittled as well as possibly quite unwell. Everyone in that position needs one true friend who stays through thick and thin times.

When you are clear about the path she is taking then I'm sure there will be many answers to your questions on these pages.

Regards,
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