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Newly Diagnosed...Please Give Me Some Advice

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Posted 8/11/2011 8:54 PM (GMT 0)
My name is Renee and I posted on here recently when it was suspected that I might have MS. It is now more likely than ever that I do.

My mother has it. I was in a car accident this past April and had an MRI of my neck which revealed an inactive MS lesion in my cervical spine. I had two more MRIs which revealed one lesion in my thoracic spine and two in my brain, all inactive. Following this, I had blood testing (which the neurologist said looked more like Lupus...) and a Lumbar Puncture which according to the doctor was "positive." She said I should see an MS Specialist to discuss treatment and then follow up with her so that is what I'm doing. I also have the VEP test tomorrow, although I've always had great vision so I'm not sure what that would show.

I don't believe I am symptomatic, but its difficult to tell because so many things could be MS, or could be just normal...I had tingling in both of my feet about a year ago, when I first started running regularly, but that went away. I now get some tingling shooting down my legs after I run. I have pretty good balance but occasionally tip over to the side a bit, but who doesn't lose their balance on occasion? Once in a while my one ear clogs up, but that could certainly be allergies. Many times I find it hard to concentrate or to articulate what I'm trying to say, but many people say that's normal too. And finally, I'm tired all the time no matter how much sleep I get but I am also a very active person...

I'm just so confused now. My mom has Relapsing Remitting MS and generally has gait issues. She is not confined to a wheelchair but does have a hard time walking. Much worse in the heat/humidity. I know I'm at the beginning stages assuming this diagnosis is accurate. I am just so lost now...could it develop into her form? (I know no one knows the answer to that.) Should I get treatment if I may not be symptomatic given the possible side effects? Does this mean I shouldn't have children? (I am 25 and know I want kids one day, I have always adored babies...) Me getting it after my mom makes it clear to me that genes are involved...I wouldn't want to pass it on, I don't want to be selfish but I also don't want to deny myself the experience of having children...=( Any advice from anyone would be appreciated.
Posted 8/13/2011 2:56 PM (GMT 0)
...first of all...take  a deep breath....then another....

 

This falls under the catagory of ..."...it is just not fair..."...

 

Many, many things in life fall under that catagory....

 

Are you happy with your neuro?

 

This is not a disease where you might die....

 

Check with state MS Socirty...they have meetings for newly diagosed...

 

YOU ARE NOT ALONe!!!!

 

GREAT LUCK!!!

 

JOHN

Posted 8/13/2011 3:10 PM (GMT 0)
Thank yóu John. I like my neuro but she doesn't seem very knowledgable about MS so I may switch after I see the specialist for my consultation. I appreciate your kinds words and I know I will be ok. I just hope it doesn't completely change my life course.
Posted 8/13/2011 3:13 PM (GMT 0)
John has lived successfully with MS for many years. He has some good advice. Find a doctor you love (not one you tolerate). Go after life as I'd you have no limits. Most experts suggest early and consistent treatment. If I were you, I'd consider Copaxone as it has the fewest side effects.

A therapist who has experience in dealing with the issues of chronic illness may help you to find your way. There is also an excellent book out there. "MS and Your Feelings" by Allison Shaday. She is a therapist who happened to be diagnosed with MS. She includes journal exercises that are very helpful if completed with sincerity and effort.

Good luck. Please let us know how you are doing.
Posted 8/13/2011 3:20 PM (GMT 0)
Thank you Gretchen, I will definitely pick up that book. I feel very fortunate ti not really be symtomatic, especially when reading about what other people are going through on this website.

I will certainly consider the Copaxone, my only worry is that I know I want children eventually and 1. Woiuldnt ever want to knowingly pass this on and 2. Know that means going off of any MS meds. But I guess that would be ok for a short time.

I have so many questions, my appointment in September cannot come soon enough. But as I said, it seems unfair for me to complain given other peoples circumstances. I have a lot of respect for the people who push through it and do as you said, live their lives as if they have no limits. I'm a runner and hope I'm not told to stop running. I'm also a singer and would like to continue pursuing that. And I have always known I would want a family one day. Hoipefully I can still have all of those things. :) Maybe it will even remain inactive.
Posted 8/13/2011 7:03 PM (GMT 0)
You will be told to stay as absolutely active as possible. You should run as much as you want. A healthy lifestyle is absolutely the most important defense against profession. Eat well, exercise lots, no smoking etc etc.

There is evidence that pregnancy is neurologically protective. Most women do very well while pregnant with MS. After hormones drop (after delivery) there is a risk for a flare. Again, don't let this stop you. Also, MS is considered mildly hereditary. Have a baby if you want. There is not guarantee that you will pass MS on. Do be sure that any child you have recieves D-3 supplements. That is a strong factor........low D-3 during childhood.

Write all your questions down before you go to your doctor. It is amazing how easy it is to forget during these stressful early appointments.
Posted 8/13/2011 7:06 PM (GMT 0)
All great advice that makes me feel a lot better. :)
Posted 9/1/2011 4:52 PM (GMT 0)
Nay, I was recently diagnosed with RRMS (in July) and have had those same thoughts/questions. Some days are better than others but I am trying my best to stay positive. I just turned 30 and want kids...and I will have them. I think we all wonder if we may pass it on, but the chances are limited and people can get anything at any time. Heck, no one in my fam had/has MS. My neuro is very supportive of pregnancy and just stresses that going back on your meds quickly (within a month) after delivery is important.

What I keep telling myself is that I can't let this stop my life. Staying postive is a great medicine but I have allowed myself a few "feel sorry for myself days/hours" cause a good cry is needed during this time. I

I started taking Rebif about 4 weeks ago and so far I haven't had any side effects. I never thought I would get passed the needle, but I did. After practice it got better. Do research on all the options. Honestly, forums like this helped me decide because people are honest about how they feel while taking them. Your neuro should go over them as well. Make sure you trust and like your neuro, you will see them at least yearly :) It will be your own decision more than likely, and if you don't like the meds you choose you have several other choices, which is amazing thinking that it's been less than 2 decades that any meds have been on the market for MS. There is even a new oral med (and 1-2 in the making), though it is pretty new and I am always a little timid about newly approved meds, though, taking it with my vitamins (I take a ton of those now) in the morning sounds nice :)

Just know that everyone's MS is different and seeing that you caught it early and want to take meds to slow it down is a great thing. Don't stop running or singing and try to stay away from the depressing forums as they didn't help me stay positive at all :)

Oh and the book Gretchen suggeted is on my list, I think it also had good reviews on Amazon!
Posted 9/1/2011 5:10 PM (GMT 0)
Thank you so much for that Ash. It feels good to know that there are other people in my shoes. I'm glad to hear that you're doing so well. I see how my mom is, and I hear of people ending up having to use walkers or wheelchairs and I just cannot picture myself in that situation...its like I have that "it can't happen to me" sort of feeling. But every now and again I find myself getting that pang in my chest, that "oh, yes it can" feeling...man I hope not. I will definitely take your advice and get on meds as soon as possible (seeing MS doc September 12) and go from there...this will only be a consultation and likely he won't take me on as a patient (seems like the best doctors are impossible to see!) and then I will have to find one that have a spot open...the one I have currently seems pretty clueless about MS which partly explains why she was able to see me...argh!
Posted 9/1/2011 6:20 PM (GMT 0)
No problem :) It has definitely been tough so don't feel bad if you have bad days. I can't think of anyone who wouldn't. The attack that made me realize what was wrong sucked...it wouldn't have been so bad if I knew what to look for but at least now I do and that is something your neuro should help you learn. But, now I am much better and walking around and back to work (I was really sick of daytime tv :) ). I have probably had this for a few years at least I just though everyone felt those things...I guess not.

Hopefully, the doctor you will see will have some info. In the meantime, I would research about all the meds and their side effects, etc. Remember, they effect everyone differently. The interferon's tend to have the flu-like symptoms but not for everyone, and they are supposed to be temporary and all the injectables tend to leave these pretty circles (site reactions) on your skin (but I found some tricks that have worked for me so far if you ever need suggestions). Those things for me are tolerable if they slow this down. Your doctor will probably leave your first choice up to you...at least mine did but they still taught me about all my options.

When I think about the worst case scenerio's I tend to freak myself out...then I try to remember that if I ever do end up not being able to walk hopefully that will be a loooong time from now and I will make that the coolest wheelchair or walker anyone has ever seen :)

Keep researching for doctor's in your area and don't feel bad if you call them every day for an appt...maybe they will give in.

Just try to relax for now as much as you can (easier said than done I know). Letting your mind go to all the horrible places just adds stress that you don't need. Like everyone else here thinks I am sure, a cure would be amazing...especially something to reverse the damage done would be a dream come true for those farther along...cross your fingers that we will see that someday :)
Posted 9/1/2011 6:25 PM (GMT 0)
My mom takes betaseron and does get the flu like symptoms sometimes. My skin is pretty sensitive so I'm thinking I will likely need your advice if I end up with injections. What was your attack like? Its so weird to be told I probably have this when I feel like I don't...but I do have a hard time concentrating a lot and am tired no matter how much sleep I get. I guess those could be MS...I really don't know. The only "flare" I ever had was a few days of foot tingling...its so hard to know what is from MS and what is normal!!! Sometimes during/right after a run, my legs tingle but that could just be circulation...

Absolutely. =) It helps that I'm really active in the National MS Society community in terms of fundraising. I'm planning a bolwling fundraiser for this October, and its definitely a great distraction.
Posted 9/1/2011 6:43 PM (GMT 0)
Hopefully, the doctor you see will run all the tests needed to rule out everything else. There are so many things that mimic each other...I was relieved to have a diagnosis. With those tests, the LP and the MRI they should be able to make a diagnosis.

Mine is not a usual attack so don't think it is super common for them to be so severe. My flare would have probably stayed just at numbness in my face if I knew what was happening and didn't blame my dentist for month. Instead after a month of facial numbness it turned into slurred speech. Went to the doctor and it took a few days to get the MRI ... after that was put on steroids. By that time I couldn't move the right side of my body. Boy that sucked. I am pretty stubborn, so even though I was super freaked out and couldn't really move, once I was able to move a little bit I started kicking my butt to get better and did physical therapy and most importantly rested. I am pretty much back to normal (took steroids and about a month of pt), though I am pretty tired like you described. They do have meds for that too if it doesn't go away...for some people it is temporary.

I now also take a ton of vitamins and have changed my diet to be healthier. Not sure how I feel about all the diet fix-its just yet though. I did, however, get an allergy test and stopped eating anything that I was allergic to...I miss pineapple. ;)
Posted 9/1/2011 6:47 PM (GMT 0)
I did have a lot of tests done...my blood work came out abnormal, they thought I might have Lupus but everything was negative. I am worried that I have it (judging by the MRIS and LP) but that they won't diagnose or treat since I don't have symptoms. And then it will progress and do damage. That's my main concern going in.

Your experience sounds awful...its a good thing you're tough and pushed yourself through it.

I have had the tiredness for a long time, but everyone says its because I'm so active, always doing something. I don't know, maybe it is.

My diet sucks, I don't cook which certainly doesn't help my cause but i don;t see myself ever learning to do that lol.
Posted 9/1/2011 6:48 PM (GMT 0)
**It meaning MS not Lupus I am convinced that I don't have that just wish they knew the cause for the high ANA levels
Posted 9/1/2011 7:07 PM (GMT 0)
I would totally get a second opinion if you can just to see what another doctor has to say (hopefully, they know a little about MS). They may even run more tests to rule out other things. I got one even though I could barely walk at the time. I can't say that your worries aren't justified, just don't scare yourself into thinking something crazy is going to happen or you will drive yourself nuts with every odd feeling you get. A MS Specialist or Neuro should be able to diagnose even without symptoms of an attack I would think, but I am no doctor so I may be totally wrong.

My attack was an eye opener, I am just glad I know what to look for now and hopefully it won't be like that again.

The diet has been interesting for me as well. I am cooking stuff I had never heard of before my diagnosis. I even quit smoking (I know, gross)...but, I never thought I would, ha ha. Though, I will never give up my wine!
Posted 9/1/2011 7:10 PM (GMT 0)
The specialist I'm seeing the 12th is supposed to be one of the best in the city so hopefully he will be able to figure this out! Its great that you quit smoking, my mom still hasn't been with the MS. Frustrates me to no end.
Posted 9/1/2011 7:20 PM (GMT 0)
Awesome! I hope they clear up any questions and get you going with answers. If it does turn out to be MS and you end up picking a med to take, reach out to me anytime if you have questions.

Yeah, it was easier to quit smoking than I thought it would be. I always dreaded the day but I really don't miss it.
Posted 9/1/2011 7:22 PM (GMT 0)
Thank you I absolutely will do that. I just want a resolution!!! And my best friend just quit and says the same thing, though she still craves it every now and then. My dads in the process of quitting, using one of those electric cigarettes. So far so good! =) Being a singer, I've never been a smoker or a drinker.
Posted 9/1/2011 7:37 PM (GMT 0)
Good for you! I wish I never started...plus, they are soooo expensive. Good thing I only sing in the shower :)
Posted 9/1/2011 7:39 PM (GMT 0)
I know! I made that argument to my dad so many times...imagine how much money you would save if you stopped! He finally got the message lol.
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