Newly DX happy yet sad at the same time, is this normal??

[MDeStef84]

so ill try to make this long story as short as possible. Since feb 2011, ive been going through a wave of ups and downs, symptoms, tests, etc.. Originally I was told I had a stroke in february 2011, a lesion was shown on the left frontal lobe on the brain, and with my ongoing symptoms it was from the stroke... Then 2 lesions showed on 2 seperate mri's of the c-spine and was told I might have MS. So i went to a Ms specialist a few hours away in north jersey. Had a spinal tap done, 2 OG bands showed in the CSF that werent seen in the blood. Had some vision issues, couldnt see red out of my left eye, went to a neuro-opt and was told I had optic neuritis in the left eye, he wrote his report and sent it to my neuro, i also received a copy, it was in his professional opinion I should be started on disease modifying rx. My neurologist still didnt want to make a dx or put me on any meds. He did follow up MRI's, lesion on the brain still showed, but lesions in the c-spine were gone. The neuro said they must have been shadows, which I didnt quite understand if they were seen on 2 prior seperate mri's. Over the week of thanksgiving I had what i thought was a horrible panic attack and ended up with weakness in my left arm, was hospitalized and had mri's done, no new lesions and was told it was from disc herniations in my neck, was told to go to physical therapy and be done with it. well i never went to physical therapy and gradually the strength in my left arm came back, its still a bit weak but more than functional. I can't be in the heat or take a hot shower, i feel weak, and also like i'm going to faint and pass out, and also feel like someone is sucking the life out of my body. My memory is screwed up, im clumsy and my balance is out of wack. So, on may29th I was getting out of the car to go to work and my left leg buckled underneath me, i couldnt walk on it or bare any weight on it at all. No pain anywhere, no nothing. Just was like my left leg didnt want to do anything. I couldnt get up to north jersey to see my neuro so my pcp sent me to his hospital down here, they did more MRI's, viewed my old MRI's (all 5 of them), did another spinal tap and did bloodwork(testing for NMO aka devics disease, results are still not back yet).. There were no new lesions on the MRI, but I had IV steroids and 4 days of those and 19lbs heavier, the strength in my left leg was significantly better. I was sent home on a steroid taper, physical therapy 4x a week and a follow up with the hospitals neuro department. I went to see their Neuro and he told me that with all of my history and symptoms he doesnt understand why I was not yet diagnosed and why wasnt I on any disease modifying meds. I told him he'd have to ask the Neuro in north jersey I was seeing... So I was recently diagnosed a little over a week ago with RRMS (as long as the NMO blood test comes back negative) and started on Copaxone injections. I think I'm happy that I finally have diagnosis, eventhough I did not want to be diagnosed with MS. But Im also having a really hard accepting this diagnosis. I'm 29years old and have 3 small children, getting around using a walker and cane, and even though my left leg gets better everyday, mentally I'm not in a good place right now, I was thinking about seeing a therapist to cope with all of this. Is this a normal reaction? Also, I've been on copaxone for 7 days now. And on the 6th day i was hit with a horrible, i mean horrible upper respiratory infection, my kids are walking and running around with runny noses and I can barely get off of the couch, highest fever of 102.8, chills and aches all over my body. Is this from the copaxone? does it lower the immune system? and is it safe to still take the injections while being sick? or should I stop until I feel better? i still have been giving myself the injections while I've been sick. any insight on what to do with the copaxone and virus would be warmly welcomed. Thanks.

[Guitar_grrrl]

Hi, and Welcome!

I'm sorry for your diagnosis, but happy you have a neuro who seems to be on the ball.

Like Marcia, I'm 55, and have had MS for 25+ years, but was only diagnosed 5 years ago.  I tell you, I still go through the emotional roller coaster.  Talk therapy is the best!  It helps manage the wide range of emotions we  feel.

Exercise is a great way to manage our mood.  Personally, after a good Yoga session, or a bike ride, my mood is greatly enhanced, and my energy seems better, too. I know the fatigue associated with MS (believe me!), and it almost seems counterintuitive to get out and move our bodies when we feel completely drained of energy.  It does help, though.

Cheers!

[Antalya]

Hi - I have had MS for almost 30 years (am now 55).  The first 10+ years, after optic neuritis and all kinds of icky symptoms leading up to diagnosis, I did nothing.  Not even visits to neurologists.  I was FINE (still had symptoms, but there was really nothing they could DO).  

After my second extreme optic neuritis attack, I went on Avonex for 14 years, then Tysabri for a few months (do not recommend that!).  Now Tecfidera.  If you look @ me you'd never be able to tell I was sick in any way.  I have all the hidden stuff.   That's good and bad.

I agree about therapy.  Too much for you to deal with on your own - a professional is a great idea.  One of the symptoms of MS is depression, and it is nice to have someone to go to who knows you already if it "hits"!  Something that might be good for you to look into is a Newly Diagnosed seminar thru the National MS Society.  Since you are in NJ, the local MS society is very good - or you could call Kessler in W. Orange to see if they have any informative seminars coming up.  That could be really helpful.  

Have you called the National MS Society?  Have you gotten any brochures or information from them (all free) ?  I have really learned a lot attending seminars and reading their info.

Lots lists that you can get on - and get lots of free info.  Neurology Now is a good free magazine.  In addition to the NMSS, there is the MS Association and a couple other organizations that can get information to you.  Support groups can be useful too -

Good luck with getting plugged in to the whole MS experience - and stay strong!

-----Marcia

[MDeStef84]

Thank you all so much. Your responses were very insightful. I appreciate the warm welcome, and look forward to chatting with you all :)   I spoke with my Neuro today, and was told that the upper resp virus was unrelated to the copaxone, so I was extremely happy to hear that.

Im going to schedule a consult with a therapist, because I think it is best as well... Thanks again so much :)  

[Lulu54]

Greetings and welcome to our special group, here.  I hope you will find the information and companionship helpful.  You have a bunch of great information already from the others - I can only reinforce what has already been written.

Copaxone won't make you sick - you and your children obviously are sharing some crazy cold virus.  Copaxone is an immunomodulator and not an immunosuppresant.   An immunomodulator teaches the immune system to react differenty .  The immunosupresant suppressed the entire immune system.

Many times we are confused about MS and germs - our immune system is in overactive mode and we tend to get sick less than the normal healthy folks.  But when we do get sick, it can really take us down for the count.  The fever that often goes with an illness can cause a pseudo-relapse with the MS.  When we get better and the fever or infeciton goes away, we usually feel much better.

Yes, this is quite the ride - just when the coaster comes into the station and you think you are safe to get off the ups and downs, the ride can start up again.  Don't be hard on yourself - it takes a good year or so to adjust to the idea of having MS as a constant companion.

Talk therapy is an excellent idea - I hope you will take the time to work through this with the professionals.And of course, the fine people here are always available.

hugs, Laura

[HVAC]

We call the first year a roller coaster because your emotions go all over the place even to denial. This is normal. Yes were are happy to finally have a diagnosis but sad at the same time.

It is important to realize no two cases of MS are the same and every symptom of MS may not come your way.

My life for example has changed little since my 2009 diagnosis. I am able to do everything I could do back then.

Alex

[kwarendorf]

Hi stef- I'm sorry you have joined our club, but glad you now know what to fight.

Your symptom history touched on many of the major items on the MS list. Even though it took you 2 years to get a diagnosis, it sounds like you finally found the right neuro. This is key, because you are likely going to be married to him/her for a long time :-)

Your reaction to your MS dx is absolutely normal. We all go through some period of anger/disbelief/despondency. You've just been told you have an as yet incurable disease of or central nervous system. Your reaction is not likely to be "I'm going to Disneyland!" :-)

I saw a therapist for a year after my diagnosis. And I don;t have any kids :-)

Kyle

[kwarendorf]

Hi Stef - many of our friends here have visual issues that make reading a large bloc of text difficult. I have taken the liberty of breaking up your original post.

so ill try to make this long story as short as possible. Since feb 2011, ive been going through a wave of ups and downs, symptoms, tests, etc.. Originally I was told I had a stroke in february 2011, a lesion was shown on the left frontal lobe on the brain, and with my ongoing symptoms it was from the stroke...

Then 2 lesions showed on 2 seperate mri's of the c-spine and was told I might have MS. So i went to a Ms specialist a few hours away in north jersey. Had a spinal tap done, 2 OG bands showed in the CSF that werent seen in the blood. Had some vision issues, couldnt see red out of my left eye, went to a neuro-opt and was told I had optic neuritis in the left eye, he wrote his report and sent it to my neuro, i also received a copy, it was in his professional opinion I should be started on disease modifying rx.

My neurologist still didnt want to make a dx or put me on any meds. He did follow up MRI's, lesion on the brain still showed, but lesions in the c-spine were gone. The neuro said they must have been shadows, which I didnt quite understand if they were seen on 2 prior seperate mri's.

Over the week of thanksgiving I had what i thought was a horrible panic attack and ended up with weakness in my left arm, was hospitalized and had mri's done, no new lesions and was told it was from disc herniations in my neck, was told to go to physical therapy and be done with it. well i never went to physical therapy and gradually the strength in my left arm came back, its still a bit weak but more than functional.

I can't be in the heat or take a hot shower, i feel weak, and also like i'm going to faint and pass out, and also feel like someone is sucking the life out of my body. My memory is screwed up, im clumsy and my balance is out of wack.

So, on may29th I was getting out of the car to go to work and my left leg buckled underneath me, i couldnt walk on it or bare any weight on it at all. No pain anywhere, no nothing. Just was like my left leg didnt want to do anything. I couldnt get up to north jersey to see my neuro so my pcp sent me to his hospital down here, they did more MRI's, viewed my old MRI's (all 5 of them), did another spinal tap and did bloodwork(testing for NMO aka devics disease, results are still not back yet)..

There were no new lesions on the MRI, but I had IV steroids and 4 days of those and 19lbs heavier, the strength in my left leg was significantly better. I was sent home on a steroid taper, physical therapy 4x a week and a follow up with the hospitals neuro department.

I went to see their Neuro and he told me that with all of my history and symptoms he doesnt understand why I was not yet diagnosed and why wasnt I on any disease modifying meds. I told him he'd have to ask the Neuro in north jersey I was seeing...

So I was recently diagnosed a little over a week ago with RRMS (as long as the NMO blood test comes back negative) and started on Copaxone injections. I think I'm happy that I finally have diagnosis, eventhough I did not want to be diagnosed with MS. But Im also having a really hard accepting this diagnosis.

I'm 29years old and have 3 small children, getting around using a walker and cane, and even though my left leg gets better everyday, mentally I'm not in a good place right now, I was thinking about seeing a therapist to cope with all of this. Is this a normal reaction?

Also, I've been on copaxone for 7 days now. And on the 6th day i was hit with a horrible, i mean horrible upper respiratory infection, my kids are walking and running around with runny noses and I can barely get off of the couch, highest fever of 102.8, chills and aches all over my body. Is this from the copaxone? does it lower the immune system? and is it safe to still take the injections while being sick? or should I stop until I feel better?

i still have been giving myself the injections while I've been sick. any insight on what to do with the copaxone and virus would be warmly welcomed. Thanks.

[LisaJF]

Hi there and as Corrie said, welcome to the forums where you will find lots of support from people who went through and are going through your situation.

You have definitely been through a lot and I'm sorry that you have to endure the emotional and physical aspects of MS, especially being a Mom of three kids.  In addition, you're not feeling well.

Of course it is normal for you to feel relieved and happy that finally there's a culprit disease that is causing your issue and simultaneously there is sorrow of the actual diagnosis.

As far as not taking copaxone during your feeling "sick" phase, that is something we can not even hint about what you do.  You do need to call your doctor and tell them your symptoms, and since it is Monday, I would suggest you call him/her in regard to what you're feeling symptom wise in the morning and ask your questions.  Write them down so you do not forget.  Copaxone does have side effects and the ones you mentioned, ergo, fever, chills, runny nose are listed.  This is something you should call your doctor about and see what he/she says.

Seeing a therapist is a great idea and for multiple causes such as your own mental health in effectively coping with your newly diagnosed disease, being a mother of three, to have time for "just you taking care of you" (you will not believe what an hour will do to give you that "ME" time and its for the good as well.  I would say it would far be better to talk out what you're experiencing and how it affects you and your daily life with someone who can help you.  

Although, I do not want to discount the lovely people here and all the emotional support, experiences and encouragement they give here, but it should not be in lieu of getting yourself to where you need to be.  

Please let us know how you're doing and what you're going to do about it. :)

Again, welcome to the forums

Lisa

[Corriel]

Hi there and welcome to our little corner of the web. You've been through a lot and I'm glad you finally have your dx and have started DMD therapy.

Like you, I was diagnosed with a stroke initially and have a left frintal lobe lesion and vision issues. I received my dx on April 4 this year and have just started Rebif.

I think it is quite common to feel relief with a dx, you know something is wrong and there is so much to go through to get the dx.

I personally decided to see a therapist, to help cope with the dx and learn how to control my MS and not it control me.

There are many emotional "steps" to go through with the dx, it is the same as grieving the loss of a loved one, and it takes time.

It takes strength and courage to endure what you have so far, especially with three children, and I have no doubt that you will get through the acceptance process of receiving a dx.

Take care and let us know if you have any questions, or just ned to vent. This is an amazing group of people, and their knowledge, advice and support will help you a lot.

Hugs,
Corrie