Question About Lesion Locations- Just Diagnosed

Question

Hi All, 

I went to the hospital a couple of days ago with weakness on my right side, after being admitted and many tests they found out I had MS.  I had a episode of Transverse Myelitis in 2010 and was told I could develop MS sometime in my lifetime, but all was fine up to the last couple of months.  I had experienced some brief numbness in my trunk area, and then some weird feelings in my legs, but what was really strange is I would get episodes of tachycardia that everyone kept telling me I am anxious.  I do wake up every night with rapid heart rate and it calms down and then when I wake up my heart can really go fast, and when I climb stairs.  I do notice that I cant feel temperature in my feet,  I am sorry to ramble, this is been a rough couple of days.  I was trying to research the lesion locations and I think were the lesions are located could be causing my issues with the rapid heart rate,  Back in 2010 I had a lesion at the C2 level, and a couple of small lesions in my frontal lobe.  Below are the new findings on my latest MRI.

-C2 Posterior lesion 
-A right lateral lesion at C3-C4
-Anterior lesion at T1
-Left lateral cord at T8
-Focus of increased T2 signal in the conus medullaris at the T12
No enhancement 

-3 frontal lobe lesions in the deep white matter- that are not felt to be a demyelinating process

I tried to read about the location of my Tspine lesions, and I don't know if my locations are unusual or not, if I read about them correctly they are in the grey matter.  Can anyone give me any insight.  When I was in the hospital the nurse told me my episodes of rapid heart rate was due to the lesion at the T1 level.  I am very worried that I am going to die from these lesions if that is the case, how is my heart rate going to be controlled.  I have kids to raise and a job and I don't know how I am going to go on, I don't want my heart to stop. If I have this heart rate problem then I don't know if I am going to be able to start a treatment.  I have an appointment with a MS specialist on the 20th of this month, and I am sitting here wondering what is going to happen with everything.  

Thank you for letting me vent.  I am scared for my future and that of my family.  

Good night, 
Jen

SoccerGrl · Answer

JJ, 

Thank you for your reply!  I can understand what you are saying about the panic attacks being caused by medication, in  August I tried Xanax and still had the heart racing.  I am not on any medications right now so I don't think that is what is causing my issues.  I am going to get some tests done next week so hopefully I will get some answers soon,  

Thanks!
Jen

supermum_ms · Answer

Hey Jen, 

Anxiety can mimic many many things, the similar sx's of a tachycardic heart issue, would more likely be relating to panic attacks, so anxiety is definitely one possibility, though sometimes it's not a psychological response but an actual side effect of a medication, caffeine etc  

True story, my youngest was dx with anxiety before he started school, he was placed on the lowest dose of Tofranil but soon after his anxiety escalated to night terrors so the dose was increased and changed to mornings instead of at night. He then started having daily panic attacks before morning tea, which was explained as another escalation, in his anxiety due to now being at school. 

We had absolutely no thoughts that his 'panic attacks' could of been a side effect of the anxiety medication and it wasn't until 'years' later, after he went off it and his panic attacks just suddenly stopped happening but returned as soon as he went back on them again, that the penny dropped. He'd restarted taking it at night and within days he would be woken up with his heart raising and visibly pounding in his chest, changed to taking it in the mornings and yep those daily morning panic attacks were back! 

He's not had a 'panic attack' since he stopped taking it (years!) and his anxiety levels have never been as bad as that time in his life. LOL the point in telling that story is that sometimes it's not psychological at all, so check any medications you take and take note of any decernable pattern (before, during, after) in those times when your heart is raising to see if anything stands out. 

Hugs........JJ

btw i was reading about spinal lesions the other day and noticed 'grey matter' being specifically mentioned in a few research articles and neurology publications but couldn't for the life of me find anything to explain where the 'grey matter' would be in relation to the spine.......err sorry but technically your understanding would be correct and i'm confused :D

SoccerGrl · Answer

Kyle, 

You are right, I just find it so hard to believe that Anxiety can cause this.  I have spent hours online reviewing what I thought was heart issues caused by MS, I guess I need to try to start working on my anxiety.

Jen

kwarendorf · Answer

Hi SG - 

If both your neurologist and cardiologist are telling you MS is not effecting your heart rate, I'd believe them. Anxiety is very powerful and could be contributing to your elevated heart rate.

Kyle

SoccerGrl · Answer

Thank you for all the feedback, I saw the MS specialist yesterday and I really liked him a lot. He did tell me that my MS is RR and that I need to take medication. He told me the different options and since I am not good at taking pills I have decided to try the Copaxone 40mg. I asked him if he thought my heart rate issues were related to the lesion locations and he said no. I asked if he thought my lesions were abnormal and he said no. I am still worried as my heart rate is all over the place. I went to see a cardiologist yesterday as well and he is going to run some tests but my EKG was normal and I asked him if my heart rate problems could be from the MS and he said it would be rare, I cant let it go, I keep thinking that this issue I am having is from my lesions. So the journey continues. Thank you to all that posted, it is very helpful.

Momto3andNanato2 · Answer

Some Doctor's are more concerned and compassionate than others. That being said don't be dis-couraged by any of them. Some really care about thier patients and others are only there for a paycheck. I wasted a whole year on a Neuro that ran every test under the sun twice before he would admit that he believed I had MS, I then got a second opinion and on the first visit after looking at all my MRI"s and test results turned around and told me I had MS and that it had progressed to the point that oral mediciations would not be beneficial so I just started Tysabri IV infusions. 

You have every right to feel overwhelmed and suffer from anxiety, you have just been hit with a life changing turn of events. If you still feel the heart racing is an issue find another cardiologist. Don't be ashamed to take medication for anxiety or possibly depression. It may help the heart racing. I too have dealt with alot of your feelings. My lesions are in the right and left frontal lopes of the brain and on the C spine at 4&5, and the Tspine at T8-11. Also one on the Lspine. I know this is not life threathening but it is definetely life changing. I went from running marathons, and tri-athalons, to barely being able to walk some days. 

But keep your head held high and if you are not satisfied with the answers you are getting from Doctors find another one. This is YOUR life and only you can find a peace within it.

I will be praying for you and wish you the best. Make a list of everything on your mind when you go to the MS specialist and take all of your MRI's with you.

SoccerGrl · Answer

Thank you for the reply.  I saw my GP today and she gave me a beta blocker to try and I am hoping it may help.  I need to sleep and stop stressing about my heart.  I will bring it up with the MS specialist next week as I have seen my GP and a very dismissive cardiologist who asked me why I was in his office and told me I had anxiety.

Thanks!

kwarendorf · Answer

Hi SG - 

Yes, MS can effect autonomic functions, like heart rate. It is relatively rare however. Have you told your treating doc about your tachycardia? You should do so immediately. I would also make sure you mention it to the MS doc next week.

As has been mentioned here, the mosgt inmportant thing to remember about MS is that it is not fatal. Beond that, many people with MS lead realtively normal lives. I do and plan to keep it that way :-) I've had MS for over 23 years. FOr the first 20 it was undiagnosed and thus untreated. I get up every morning ang go to work. I travel, ride my bike etc. 

Take a deep breath and know that MS is often a very mnanageable disease :-)

Kyle

SoccerGrl · Answer

Thanks Poppy7402, 

I have had it for a couple of months so I don't think it is going to go away.  I just need to see the specialist and figure out how to deal with these things.  

Thanks for the information.

Poppy7402 · Answer

I did quite a lot of reading on inappropriate sinus tachycardia last time I was sick as I was also suffering from this and did discover that it can be related to MS.  Unfortunately I've had so much going on lately that I can't remember much of what I read but if I come across the material again, I'll post the links for you.

My IST did settle a couple of weeks after I was in hospital at the beginning of September so hopefully yours will too, with a bit of time.

Best wishes

Poppy

SoccerGrl · Answer

I am just scared, my heart is constantly racing and I cant sleep at night,  I did research and I cannot find anyone else with lesions where mine are.  I tried looking up the conus medullaris leson and the anterior lesion at T1 is in the motor neurons.  I tried to look for information but I think I have something others don't.  My lesions are typical in the presentation of MS, one is anterior, one is right lateral and one is left lateral, no sizes where given of the lesions.  I did read that the lesions can effect the autonomic system and I am afraid that is what is happening to me.  I don't know why the nurse said that to me, it made me so scared, I asked her how do I live like this then and she said idk.  There is no where to run and hide from it, I cant sleep it away because I cant sleep and my husband is about sick of me.  

Thanks for the advice, 
Jen

immisceo · Answer

Deep breaths. You are newly diagnosed. For me, the first year was the hardest because I was suddenly hyper-aware of every little thing and extrapolating out of that the most extreme possible result. Some of this will go away with time, some of it will go away with education.

Things like heart rate, respiration, etc are controlled by the autonomic nervous system, rather than the central nervous system. MS involves the central nervous system.

I invite you to take a look out our wonderful (if currently somewhat hidden) Health Pages. There are many extrememly useful articles to be found there. http://www.medhelp.org/health_pages/list?cid=36 This one might be of particular interest. http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-Lesions-Lesions/show/762?cid=36

In the meantime, please try not to catastrophise. What you're imagining is beyond worse-case scenario - it's just not the way MS works. Take time to document all of your questions and concerns so you're prepared on the 20th. These appointments can be so infrequent and so short that it really pays to be prepared. 

We're always here, and local MS societies are an amazing resource of both knowledge and support as well.

supermum_ms · Answer

Hi Jen, welcome to our little MS community,

Firstly you have misunderstood "....Tspine lesions, and I don't know if my locations are unusual or not, if I read about them correctly they are in the grey matter" Grey matter is specifically to do with the brain and has no association with the spine at all, TM and MS spinal lesions are located within the actual spinal cord. 

What I know about TM is limited, TM cord lesions I think are typically bigger and can basically cut across the cord which commonly causes bilateral symptoms (sx's), both sides of the body and the sx's are often symmetrical, eg tingling is exactly the same in both your left and right sides. 

MS cord lesions though are usually smaller and present unilaterally, usually causing sx's in only one side of the body, so not typically symmetrical in nature though multiple MS cord lesions can develop, which logically means having sx's on both the left and right side can happen, still shouldn't cause symmetrical sx's though. 

Breath................statistically people dx with MS today, basically have the same expected life span, MS doesn't cause death like your thinking..........breath!

I have the up most respect for nurses, it would be unwise though to take her comments as fate-a-compli and let your thoughts run wild. Think about it, if your doctors believed your racing heart was extremely serious, or that your heart could suddenly stop or it needed immediate treatment...... do you honestly believe any doctor, would make someone wait for the diagnosis of MS to be confirmed by an MS specialist, before they do anything about a condition that could cause the death of their patient? 

One step at a time.......

HUGS............JJ