I am new here, having come to these boards quite a lot lately to try and decipher what is going on with myself..still a bit confused, and honestly a lot scared, as I am a mom and sole caregiver to my 4 year old son (my husband works out of town) and therefore need to be healthy (not my choice apparently). That being said, here's the long short about me.
About a year ago I woke up feeling completely stiff in the joints from the waste down. Doc took lots of blood and X-Ray, said fibro. On to this year, about 3 months ago..sudden numbness and weakness travelled around. Now this is gone, and for a month, fasciulations all over, and oh, I have numbness over my right eye, used to come and go now there pretty much all the time. 2 days ago, the neck and back area really stiff and hurting (used toget the neck aches too on and off started a year ago).
Went to neurologist, sent me for MRI (today) with and without contrast. Well, I managed the without, and had a little freak out (i'm cloustrophobic) nd left without getting the contrast part .
Can't believe I did that, but needed to get out of there.
Sometimes my calf muscles feel weak, sometimes they don't. Sometimes my arms of fingers feel week (or PULLED) if you know what I mean, sometimes not.
I am having a bad time with anxiety waiting for the new blood tests to arrive (I was told it would take 4 weeks, I'm on the 3rd). Any thoughts? I haven't heard or read a lot on this site about the numbness over the eye thing, which seems to be my symptom that sticks around the longest. Also, my right ear bothers me when I type, like it's popping along with the typing?
I don't know either.
Thanks so much.
Thanks so much for getting back to me. I actually did have the MRI today, just didn't stay for the contrast part (I was about to jump out in the very beginning but made it through the entire first part!) I spend a lot of time on the boards trying to figure out what's wrong with me, but in my heart I think I know. I just want to be able to take care of my son, that is what breaks my heart, the not knowing what will happen.
Thanks for your reply and have a very Happy Thanksgiving.
We just moved here a little less than a year ago from Tampa FL. I was having symptoms there. But yes, they tested me there and here. Both negative. My neurologist sent my new blood tests to California..I think to the big lyme lab there. Just to be certain.
I've been doing a lot of research about MS, Lyme Disease and Dermatomyositis lately, since this was/is the differentials for my problems. Regarding MS, there is increasing evidence that the disease is triggered by Chlamydophila pneumoniae. A Italian study published in May of this year was able to detect Chlamydophila pneumoniae in 64% of their patients, and a new study in the USA by "Dr. Subramaniam Sriram and coworkers, publishing their results in the Annals of Neurology, have demonstrated the presence of a specific type of bacteria (Chlamydophila pneumoniae) in 100% of the 37 multiple sclerosis patients they studied."
This is potentially really good news for MS sufferers and it may explain why the University of Calgary is reporting dramatic reductions (80%) in MS symptoms when they treat them with longterm minocycline.
I am not a Dr but I have had to do a lot of study to figure out what was happening to me, and I would guess that in North America most cases of MS are caused or triggered by Chlamydophila pneumoniae, with a subset having misdiagnosed Lyme Disease either as the cause of their symptoms, or in addition to the Chlamydophila pneumoniae infection. A small % of MS may be caused by hereditary factors or viruses, and this seems reasonable since not everyone responds to minocycline.
Several of the Boston Hospitals have MS centers/clinichs/whatever-you-call-em. If you THINK you have MS and aren't getting answers from your local doc, find if one of these will test you or guide you to somebody who can give a definitive diagnosis. These days, thanks to MRIs, lesions are usually spotted easily, at least that's how it's been w/ each of my husband's episodes ....
Hi Robbysmom. Im sorry you are going thru this. I personally do not hold alot of water to the Chlamydophila pneumoniae theory. Although there is no reason to think that this couldnt be a trigger- in the past ten years, if you look for a reason to trigger or have MS, youll find it from everything from Chlamydophila pneumoniae to diet soda! In between, youll also find that minocycline, other antibiotics and even certain herbs (which can kill you) are also "cures" for MS. I hate to point this out, but working for a pharmaceutical company most of my life- if one of them sponsors a study, they can make the studies 'SHOW" just about anything they want them to- and its legal.
That being said, MS is a central nervous system disease. IT can affect the eyes, Spine and brain. It is caused by attacks on the Myelin Sheath (the protective nerve coating around the nerves) those attacks are "episodes" or "relapses" and the scars they leave behind are Lesions. Like Lyme disease, Fibro and even Lupus, this autoimmune disease presents differently to many people- in fact, no two cases of MS are the same. If you have had Lyme ruled out at Igenex (the big lab in California) its safe to bet you dont have Lyme..however, there are many false negatives with Lyme Disease. So if you havent had blood work sent to Igenex, talk to your doc about doing so.
If you have had MRIs which do not show Lesions, and I realize you probably havent gotten your results back yet- then the next step would be a Spinal Tap to look for Obands. Obands show up in 95% of MS patients. All of these tests, MRIs, Spinal Taps and even EMGs, can rule out other diseases which mimic MS. The whole process of dx MS is very lengthy for some people, but in many ways, thats a good thing- although NOT knowing is hard, not having enough symtoms to definately dx, is a blessing- meaning the disease progression is very slow. When this disease attacks hard and fast, there is usually no doubt left in a Neuro's mind what is going on.
As far as taking care of your child. You will. No doubt in my mind. people live with MS for tens of years without ever knowing they have it. Ive been dx 2.5 years ago, and believe me, if I didnt tell you, you would NEVER know I have the disease. I do my shots 3 times a week and live my life like everyone else. I have 3 stepkids, a needy husband and a fulltime job which keeps me going 60 hours a week as a Director. I travel, and do everything that needs to be done. Yes, Im more tired then I need to be- but MS is mind over matter. It doesnt control us- we control it.
I hope you have a wonderful thanksgiving.
It's less about not being able to get an answer, and more about the answer taking a really long time to get here...I'm not being impatient, just spend too much time worrying and guessing about what the future will bring. It's hard when you have a child and your spouse is out of town 5 days out of 7. There seem to be lots of strong people out there that are making it however, and it's good to read about them.
Thank you so much MSNik!
What a wonderful post to receive right before the holiday. I think I need a kick in the pants every once in awhile. Hearing that you take care of so much and still deal with your MS is truly and inspiration. I'm glad I got to start my day reading this.
Have a fantastic Thanksgiving.
but MS is mind over matter. It doesnt control us- we control it.
No, Nikki, that is incorrect.
This disease IS NOT mind over matter and MS IS IN control. MS will do what it wants when it wants, sometimes no matter what you do, don't do or think.
Robbysmom, I don't know if you have MS, only time and testing will give you answers. I have 2 children both of them born after I was dx'd with MS. They are now almost 17 & 19. When they were 2 & 4 I had a severe relapse. I was still capable of taking care of them.
I have been a soccer mom, taxi service for my kids and thier friends, did birthday parties, took them to Disneyland twice, helped out for school activiities and have done many other things with and for my children. There are many with MS who do the same thing. It's not always easy but, our children are very important to us.
If you are diagnosed with MS you will be no different. You will still be there for your son, some days will be different than other days and your son will adjust to those differences.
I know your scared. Try to wait for the test results and what they may or may not show before you let your mind go to some of those scary thoughts. Focus on your son and you will find your bad thoughts leaving.
Let us know what you find out, we care.
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression
Thank you so much. Hearing all these great stories of moms taking care of their kids despite the illness is exactly what I need. So glad I signed up for this board.
Have a joyous holiday. (:
PS: Would it bother anyone if I asked an occasional question about symptoms, etc? The literature is sometimes confusing and contridictory, so much better to talk to people in the know!
I would have to agree in part to what Snoopy has said as well as Nikki. It is my personal opinion (non-medical) that you can control some aspects of this disease as far as avoiding certain triggers. BUT it is in no way an absolute control. I still have seasonal attacks and attacks which come no matter what I do to avoid them.
I do believe that if you allow MS to rule your life, then you lose. Focusing on things other than your MS allows you to control your life. When MS can not control your life, then you win. There will be days and weeks when you are in poor shape. During those days and weeks focusing on other things will help. I remember I spent 3 months confined to bed, but I still got on the internet, chatted with my kids, taught home school, and did all I could do.
Your family will certainly need to step in for you some days. My sons do many of the chores I used to do. There may be days when you will not be able to clean the house or do the laundry, etc. Remember that you must be healthy in order to help those who need you. If you have MS, consider a power chair for your bad days. You can conserve energy and "be there" for your family for more hours.
Lastly, I truly hope you have something that is easy to resolve. If you have MS, come back to this board for support. You are not alone.
Thanks MSJayhawk. (:
My symptoms are a pretty long list, most of the usuals, although it also seems that some are missing from the usual list as well...two that plague me constantly are the fasciculations (which I understand is not the usual MS complaint) and this numb spot over my left eye, used to come and go and now stays all the time, it's very annoying, but nothing I can't live with. Sometimes, when I'm tired it seems, it spreads up and around my head, this numb feeling. The neurologist seemed most concerned with this, which confused me greatly, considering all the other things that were going on!
Thanks so much.
Your varying symptoms are evidence supporting the need to keep a journal. As each of us is uniquely created, there will be "textbook" symptoms and your own symptoms which may be shared by few. The goal of your journal is to help your doctor know your condition and better formulate a planned offensive.
My right eye, for example, is quite sensitive to light. Since 2002 I have worn a pair of polarized shades that allow me to use my right eye about 90-95% of the time. There are days when it is overcast and I do not need the shades. My doctor has decided that this is something unique to me as she does not have other patients with the same problem.
Keeping a journal allows your doctors to know when something is MS and when it may not be MS. Be detailed in your journal and the facts will allow you to get the best possible care.
Right now you need a double dose of Job's Patience. You are in "limbo" not knowing, but soon enough you will know. As you are in MA, the MS Association is in "your neck of the woods". If you do indeed have MS, they have equipment loan programs as well as a lending library. There are books written for children about a parent having MS. Educating your family and winning them to your point of view (that is from where you exist) can be trying. As those around you understand your limitations and you learn to allow them to step in and help, you will find a tremendous increase in independence.
When I was hit with disability in 2002, my oldest son took it upon himself to assume some of my chores. I had to learn to delegate to him and allow him to do things his way. He grew and matured and I had more energy.
I can not promise you your path will be smooth, but I truly hope it is.