Recently diagnosed with MS

[Momto3andNanato2]

Has anyone been recently been diagnosed with MS and awaiting Tysabri treatment? And been suggested that they may have Bipolar disorder due to several mood swings?

[Momto3andNanato2]

All of you guys are so awesome and caring. I am so glad I found this site. I can share things her that are harder to share with family. I have started seeing a therapist. Only had one visit. I know what I deal with and my heart goes out to all of you that have things going on much worse than me.

I will pray for each one of you and pray that whatever God's will is that we will all be able to get through it with faith and one day at a time.

Best wishes to everyone

[Momto3andNanato2]

As of right now waiting a few weeks to see if any changes in bone growth and changes in placement of the screw in my spine to decide if another surgery would be beneficial. In limbo and driving me crazy. Yes there is a nurses line for post Tysabri treatment and to my suprise I was contacted by a company called Active Source that my Dr. had referred me to. They followed up after the treatment and asked alot of questions and gave me the opprotunity to comment on my experience. They sent this neat welcome packet which included alot of useful information about Tysabri, a gym bag, a neck rest and some earbuds all to use during a treatment sitting for comfort and to pass the time.

Good advice Alex I have thought about writing down my feelings and thoughts but just havent done it. I am fighting depression as well and I feel I am a burden on my family. Im trying to let go and just let them be them.

[HVAC]

My MS causes something that looks like Bipolar disorder. The doctor explained the MS causes my brain to get stuck on. I take medications to help my mood. I tend more to depression or anxiety. Some of it is situational. I have MS and Cancer. When I was diagnosed with MS I felt worthless and a burden on my husband I was suicidal. I went to a counselor for 5 years after diagnoses of MS then Cancer. It helped. I find writing helps me the most. I write certain things then erase them. Mindfulness Meditation has worked wonders. Simple things like if t=you get mad at a situation realize it is already in the past and there is no point in dwelling on something in the past you can't change.

Alex

Ale

[kwarendorf]

I think it will be difficult to address the jerking in your legs until you rectify the orthopedic issues in your spine. What are the plans to deal with the cracked screw/lack of bone growth? Also, I doubt your eye jerking is realted to the lesion in your t-spine. Symtoms usually occur at the level of the problem and below, meaning towards your feet.

As to your family, they are as scared as you are :-) They don't know what to do so they're smothering you. Let 'em :-)

Kyle

[PeninaD]

So glad you found a good fit with an MS specialist.  Does their office have a dedicated MS nurse that you can call with your post-Tysabri concerns?
  
As for your family (and I'm speaking as a mom of a pediatric diagnosed MSer), they love you, this is 'new' to them.  
Perhaps there are groups for caregivers that you can find for them, so that they can vent, and learn away from the immediacy of being with you, which might help them take a few breaths, and learn some balance and sense of proportion?  Really, it's not easy, I'm sure I still drive my daughter nuts!

[Momto3andNanato2]

Since my last post I have saw a psychicatrist that has confirmed that I DO NOT have bipolar disorder. What a major relief. I have depression issues stemming from the major changes that have taken place over the last year. I have since dropped neurologist #1 and decided to stick with the Neurologist that gave me the second opinion and that jumped right on the MS and got my treatment started so quickly.

I had my first Tysabri treatment last week, the infusion was not bad at all. For about 4 days afterwards I had a really bad headache. Then just the past few days I have had these twitching in both eyes, and uncontrollable jerking in my right arm and both legs. I am wandering if this could be from the nerves misfiring from my spine where the biggest lesion is.

I also followed up with the surgeon that did my back surgery in May and found out that one of the screws in my back is cracked and where the spine is fused there is little to no bone growth yet. This is worrsim because I have had to dis-continue physical therapy, Dr. is afraid it will do more damage than good at this point. I basically cant do anything. My legs are extremely weak and I ache all over.

My family treats me like a child, they wont let me drive anywhere alone, if I don't answer the phone as quickly as they think I should then they start calling each other tracking me down. I know they love me and care about me, I am just having a hard time trying to understand how all of this happen so quickly and how I am suppose to get back the part of my life that I have lost.

Best wishes to everyone, I hope you all are doing well.

[Momto3andNanato2]

Thanks to everyone for their post. I will be starting my first treatment of Tysabri this week. I am scared and nervous about what to expect, how its going to make me feel, the biggest side effect I have read and am concerned about is the heaviness in arms and legs. I surely hope not I can't stand to feel heavy and restricted in my arms it makes me feel bound up and can't get free. I was negative for the JC Virus so the Dr. assures me that there is no concern for PML. I am doing physical therapy twice a week, I have had a couple of falls with my legs just buckling.

I am steering clear of the first Neuro Dr. and have made the choice to drive an hour further to get to this most wonderful MS specialist I have found that has taken my health seriously and is doing his best to help me.

I wish all of you the best, thanks for your thoughts!!!!

[SarahL2491]

tysabri was my first drug, have been on it since 2011

[kwarendorf]

As SCG said, Tysabri is not designed to make you feel better. It, like all of the available disease modifying drugs (DMDs), is designed to keep you from feeling worse. Its purpose is to slow or stop the progression of MS.

There are treatments that are aimed at making you feel better. THe most common of these is Intravenous SoluMedrol (IVSM).  SoluMedrol is a corticosteroid. Administered in large does, usually 1000mg/day for 3-5 days, it works to reduce the inflammation caused by MS. It is the inflammation that causes many relapse related MS symptoms.  

For other long term symptoms there are other specific remedies. FOr example I take a combination of Lyrica and Elavil to relieve my neuropathic foot pain.

When I read your post, I saw that it was the first neurologis, not the MS specialist, that mentioned bipolar. I agree with those you have urged you to steer clear of him. As the MS specialist about IVSM. It may be a way for you to start your way towards your new normal :-)

Kyle

[SoCalGirl2007]

I've just started tysabri in June and had my fourth infusion. I was on rebif for 7 years and was doing well until the last year when I started having a lot of problems with stiffness (spasticity), weakness in my legs and poor balance. I have been very tired and wondering when I will feel "better". My dr reminds me that tysabri is not gonna make you feel "better" it should stabilize you and slow progression of MS. I have been going to PT  twice a week, taking good vitamins (food-based) and trying to do as much as I can to try and feel "better". Dr says that I need to give tysabri 6 months. I know how frustrating it is. I feel like my life has been on hold and I'd like to get back to it soon!
Jennifer

[Momto3andNanato2]

after taking the tysabri how quickly did you notice improvement in your condition? have you been able to regain a more normal lifestlye? Right now I just am exhausted all the time about 3 to 4 hours of any activity from the time I am able to get up is all I can handle then Im wiped out.

thanks for the post and thanks to JJ and Essi. will keep in touch.

[essdipity]

Oops, wasn't quite finished....wanted to talk about the Tysabri issue.

It does sound as if your disease is quite aggressive. I'm wondering why, then, it has taken 3 years for a diagnosis. You might have been started on some drug years ago. I don't know if that would have helped, and I'm not at all saying Tysabri is a bad choice now, but once again I'm questioning the competency of your doctor(s).

Hang in there and keep posting. There are lots of knowledgeable people here.

Best wishes,
ess

[essdipity]

Great response by JJ.

Mom, if your current neuro is the one calling you bipolar, do what you need to to find someone else to see. There are members here from NC, and you might want to start a new post asking members in NC for their suggestions and comments about MS neuros. They would respond by private message, since we don't mention names in a negative context here.

You could also go to mscare.org, which is the site of a consortium of true MS centers, and look at their directory. Finally, your local chapter of the National MS Society may be quite active. Go to one of their gatherings and ask around.bt

As both JJ and I have emphasized, there's a big difference between bipolar disorder and the possible effects of MS when certain parts of the brain are affected. They are caused by changes in the actual structure of the brain (disruption in the white matter) and not by changes in brain chemistry. Any good MS neuro should know that, and should also know that the stress of the whole MS process can lead to mood changes. These generally resolve as the patient becomes accustomed to things, is taken seriously, and is receiving good medical help.

Seeing a psychiatrist is not a bad idea, though. If you are not bipolar, and I'm assuming you aren't, that should be quickly apparent, and the report will wipe that particular issue off the table permanently.

[kwarendorf]

Hi M23N22 -

Welcome to our group. I do not have any experience with bipolar disorder, but I do woth later diagnosis with Tysabri as first med.

I was diagnosed 3 years ago at 51. It turns out I'd had MS for 20 years at that pount. Who knew? :-) By thew time I was diagnosed my doc also felt I was beyond the firstline meds like Copaxone and Rebif. I went right to Tysabri.

I was on Tysabri for 20 months and then it stopped working. I never had any problems at all with it.

KYLE

[supermum_ms]

Hi and welcome to our little MS community,

I totally agree with ess! Obviously mental health issues don't make you or anyone immune to other medical conditions, but bipolar is a 'very specific' psychological condition and MS (like any other chronic medical condition) is associated with depression and or anxiety in more general terms.  

MS can also cause strange bouts of crying and or laughing (pseudobulbar affect), but PBA is without emotion, and technically it's a distinct clinical sign of a neurological causation and not what people experience with a psychological causation. Below is an easy to read article on the differences...  

http://bipolar.about.com/od/related-mental-disorders/a/pseudobulbar-affect-pba.htm

I don't know if this thought has true validity, but could your emotional swings be related to the typical stages of grieving? I was just thinking about how common it is for the newly dx to go through the stages of grieving and that could potentially be seen as something more.

Food for thought...........JJ

PS. Could you please break up your posts into smaller text blocks, (as ess and I have) because many of us have visual issues, that make reading the large text blocks very difficult ta!

[Momto3andNanato2]

My symptoms began in the fall of 2011. I had noticed my lack of concentration on my job and my general lack of coordination. I couldn't think clearly enough to get through a normal day that I use to could have easily done with my eyes closed. My legs started buckling and I was slowly losing control of my balance. Shortly after I had blurred vision, double vision and uncontrollable pain that casued sever fatigue over the least little things I tried to do. Just shortly before all of this I worked out everyday for hours and ran marathons. Then in a period of just a few short months my life changed. I had an acute case of optic neuritis last fall of 2013 and again just this spring of 2014. I asked for a second opinion and was sent to one of the top leading MS specialist in NC. In the past 12 months the MRI's of the brain have changed with more white matter showing up and just last month an MRI of the T Spine showed a 3 inch lesion pressing on my spine. This is why I was told that the Tysabri was the best option for treatment due to the severity of the progression. I was recently hospitialized with and exacerbation which lead to complete loss of feeling to my legs and arms which at first was thought to be a stroke, I have just finished a 5 day corticosteriod treatment by home health care nurses and will begin oral steriods tomorrow for the next 10 days. Doctor is hoping by then the insurance red tape will be broken and Tysabri can begin to be administered. I havent had the strength to get out of bed for days except to go to the restroom and a quick shower, then I am exhausted. I don't want to be labeled bipolar honestly it pisses me off that my 1st neuro has suggested this. I am hesitant to even see the Psychiatrist that he has referred me to but at the same time Im scared that something could be wrong. I am confused and bumfounded because I don't understand what is happening to me. Thank you for your concerns and comments, I can use all the help I can get.

[essdipity]

Hello and welcome to our forum.

I think we could comment more helpfully with a bit more background info. For instance, how long have you been dealing with MS-related issues? Do you know why your doctor wants to start you on Tysabri rather than one of the more first-line treatments?Tysabri is usually used when less 'extreme' measures haven't worked, or when secondary progressive MS is pretty clearly evident. Not saying that is how things work on paper, but in the real world most often T is considered only after other treatments have seemed to be ineffective.

Next, in my opinion it is a big jump to conclude that an MS patient with mood swings is likely to be bipolar. Anyone going thru the rigors of severe neurological symptoms and disease diagnosis may have wide variations in mood, and I think that doesn't necessarily indicate any major problem. Also, MS is known for producing lability of emotions, so that laughing inappropriately or switching from laughing to crying in short order is well known to be a possible offshoot of MS. If this happens, it is the result of direct physical damage to the brain (MS lesions) and does not indicate a standard psychiatric illness.

All of which leads me to ask whether your doctor is really knowledgeable about MS. He or she may think so, but keep in mind that there are hundreds of neurological disorders, and no doctor is a whiz at all of them, or even many. In your shoes I'd seek out other opinions from qualified MS experts (and there are ways of finding these) before I'd let myself be started on anything but a first-tier treatment drug at the beginning, and especially before I'd let myself be labeled bipolar. It's possible that Tysabri is warranted now, and it's possible that you are in fact bipolar, but this doctor raises grave doubts in my mind, based on the info you've given.

ess