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.
