New to all of this - with lots of questions!

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

New to all of this - with lots of questions!

Postby lreynolds » Sat Jan 09, 2016 8:14 am

Hello my name is Lindsey. I am so glad to have found this site and an ability to connect with other MS patients!! I have never known one person with it and feel like none of my family or friends really understand what I'm going through. I've gotten to the point where when they ask how I'm feeling I just say "Ok" because I don't have the energy to explain all my mysterious ailments. They all think its just an eye thing and are "so happy" its getting better but don't understand all that is going along with it. Somedays the depression is overwhelming! My MS diagnosis just came last month due to what started out as blurriness in my right eye that led to complete vision loss within 7 days. After lots of testing and MRI's I now know I have optic neuritis. I am told I have lesions all thru my brain, neck and spine and have optic nerve damage in both eyes. I did 2 rounds of IV steroids and I guess they consider this flare under control. I am scheduled for my first infusion of Tysabri on Jan. 15th. While steroids did help get the inflammation down, the headaches and eye pain have gone away and am slowing starting to see light and movement in my eye, I still have lots of bouts heart palpatations, shakiness, dizzyness, brain fog, fatigue and general anxiety (which I've never had before) I thought this was all due to the steroids but is not going away. so now the questions:

Should I expect any of this to improve with the treatments? What can I expect from my first infusion? I heard many people experience side effects for several days afterward? How bad are they? Is there anything I can take before I go in? I heard someone online takes ibuprofen and claritin an hour before? will that help? Am I allowed to eat before going in? Also, I am 41 y/o which I'm told is "on the old side" to be diagnosed, then I read online that progression of the disease and symptoms can be worse.

I'm just a mess of nerves and am trying to learn as much as I can about this disease. Any info. that anyone can offer me would be greatly helpful!!! :)
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Re: New to all of this - with lots of questions!

Postby ElliotB » Sat Jan 09, 2016 9:28 am

Hi Lindsay, and welcome to TIMS. Know that you are among friends. When it comes to family, I am in the exact same situation as you and handle it the same way.

As far as your symptoms, everyone is different, and recovery is different for everyone as is results with treatment. Be patient. In time, you will improve.

There is a lot of info on this site and on the web with regard to diet, exercise, supplements and lifestyle. Learning everything you can about MS will help you better deal with it.

Hope you are feeling better soon! If you are open to advise, I would be happy to share additional insight I have gained over the last 3 years since my diagnosis (I too was diagnosed 'late' at age 53), and I know others will chime in as ell.
Last edited by ElliotB on Sat Jan 09, 2016 9:30 am, edited 1 time in total.
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Re: New to all of this - with lots of questions!

Postby lyndacarol » Sat Jan 09, 2016 9:29 am

lreynolds wrote:Hello my name is Lindsey. I am so glad to have found this site and an ability to connect with other MS patients!! I have never known one person with it and feel like none of my family or friends really understand what I'm going through. I've gotten to the point where when they ask how I'm feeling I just say "Ok" because I don't have the energy to explain all my mysterious ailments. They all think its just an eye thing and are "so happy" its getting better but don't understand all that is going along with it. Somedays the depression is overwhelming! My MS diagnosis just came last month due to what started out as blurriness in my right eye that led to complete vision loss within 7 days. After lots of testing and MRI's I now know I have optic neuritis. I am told I have lesions all thru my brain, neck and spine and have optic nerve damage in both eyes. I did 2 rounds of IV steroids and I guess they consider this flare under control. I am scheduled for my first infusion of Tysabri on Jan. 15th. While steroids did help get the inflammation down, the headaches and eye pain have gone away and am slowing starting to see light and movement in my eye, I still have lots of bouts heart palpatations, shakiness, dizzyness, brain fog, fatigue and general anxiety (which I've never had before) I thought this was all due to the steroids but is not going away. so now the questions:

Should I expect any of this to improve with the treatments? What can I expect from my first infusion? I heard many people experience side effects for several days afterward? How bad are they? Is there anything I can take before I go in? I heard someone online takes ibuprofen and claritin an hour before? will that help? Am I allowed to eat before going in? Also, I am 41 y/o which I'm told is "on the old side" to be diagnosed, then I read online that progression of the disease and symptoms can be worse.

I'm just a mess of nerves and am trying to learn as much as I can about this disease. Any info. that anyone can offer me would be greatly helpful!!! :)
Welcome to ThisIsMS, Lindsey (or is it Linda?). We are glad you found us. Since you asked for "any info," I hope that includes any opinions too.

Your symptoms are found with many conditions (not one of your symptoms is unique to MS – not even lesions on the brain!); MS is just one possible cause among many. I hope that the other more common causes were ruled out first – nutrient deficiencies, such as vitamin B12 deficiency, vitamin D3 deficiency, magnesium, zinc? (By the way, it is a good idea to request and keep your own copy of any test results. What was your B12 level? Your vitamin D level?)

Has celiac disease been ruled out? Thyroid problems? And a host of others? You have said your problems started on Nov 30, 2015, that "lots of testing" was done – but I cannot understand how all the required testing could possibly be done in such a short time (AND with major holidays in there, too).

I fear that many doctors jump to the MS diagnosis too quickly, before a thorough investigation is done.

Please research Tysabri thoroughly – discuss its side effects with your doctor (especially PML, a.k.a. progressive multifocal leukoencephalopathy – be certain that your doctor will monitor regularly and frequently for the JC virus). It has been my understanding that Tysabri is a "big gun" considered for treatment only when other first-line treatments are not effective. I have not personally used Tysabri.
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Re: New to all of this - with lots of questions!

Postby lreynolds » Tue Jan 12, 2016 8:50 am

Yes, thank you all of those things are being addressed/ruled out. My symptoms were aggressive and I am thankful that I have a neurologist, MS specialist who reacted quickly to identify the problem and get it under control. I was put on Vitamin D3 and B12 supplements as well. I have done extensive research on Tysabri and discussed all drug options with my Dr., taking all things into account, he decided this would be the best route to try first. I've heard about the possible side effects and have also heard many people having great results while on it. Hoping for the best. :)
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Re: New to all of this - with lots of questions!

Postby kw202 » Tue Jan 12, 2016 11:05 am

Hi Lindsay, I see some parallels between us. I first started being evaluated for symptom that would lead to a MS diagnosis (1/4/06 - still fresh) around mid-November.

I finally saw an MS specialist last Monday and am on my last bag of IV solumedrol as I type in fact. It's helped tremendously, I feel almost 100% at this point.

Apparently I have a "significant" load of spinal cord lesions, and just a few brain lesions, all of which are old (and yet have not not caused my any problems until now - go figure). I'm also 43, and have seen the same scary statistics about progression moving faster after having been diagnosed on the end of the age range.

My MS specialist recommended that I be put on Tysabri off the bat. After poking around, I too found the statistics that suggest it's a pretty high-powered drug mostly given to people who don't respond to other drugs. I haven't asked my specialist about why she'd recommend that as a first, but I'm guessing it has to do with the amount of lesions I have and the likelihood of accumulated disability should I get any more.

Just wanted you to know that you're far from the only one looking at these questions. A spot of good news for me today though: Just got my JCV test back and I am negative. So, Tysabri's risks, should I decide to take them, will presumably be among the lowest for me, for now.

Please let us know how you do with your first infusion, as I may be coming right behind you.
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Re: New to all of this - with lots of questions!

Postby lreynolds » Fri Jan 22, 2016 7:40 am

HI! KW202 I'm glad your starting to feel better! Our stories do sound similar! I'm so glad I found this site, hearing other peoples stories helps alot! Well, its been 1 week since my 1st infusion. It went very smoothly with no complications but am now starting into some possible side effects. I'm having some pretty extreme heartburn and indigestion, (which is not normal for me) so much so that I'm staying away from coffee and am just eating very bland. Also I'm having symptoms of a sinus infection that I will be calling the doctor about today. I met another woman having a tysabri infusion, she was on her 27th treatment and said she is really happy with the results. She said that she feels great for 3 weeks then the 4th week she starts feeling stiff and mild, but manageable, symptoms start back up. I was inspired to see how great she's doing which has really calmed me down.

Good luck, I totally understand the nerves and apprehension you are feeling over this decision. Wishing you all the best!!!
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Re: New to all of this - with lots of questions!

Postby Lynn56 » Wed May 18, 2016 3:10 am

Lindsey, I started having severe heartburn after a course of antibiotics. I started taking probiotics (from the drugstore) with every meal and my heartburn stopped. It might be worth a try.
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