New memeber/ New concerns
 

I am new to this forum but I used to belong to an MS forum a very long time ago when I was first told I had Multiple Sclerosis. I spent a year without mobility and was able to work my way back to a place where I can do most things I want to do. I try to ignore for the most part the symptoms I deal with each day and although I know that may not be the best way to deal with things it allows me to participate in life because I feel focusing on the symptoms can overwhelm me too much. I do treat my spasticity because that is not an area that I can deal with on my own and it affects everyone in my home. I am so used to the symptoms that I live with that I have learned to sort of navigate them and try to forget them. I guess it is like compartmentalizing them just like we do with life. I am very busy I am currently in 2 universities (online) finishing up my BA in Special Education, and working to further my ministers credentials. I teach during the school year, Pastor a small church on the same reservation I teach at and have 4 children at home. All of this is why I have neglected forums...No Time!

Anyway new symptoms have caused me some concern this past year and I was wondering if anyone had any incite on them so I am once again seeking help from those who have walked through it before. I have found that this has been the most helpful resource for me in dealing with MS.

Does anyone have difficulty with their heart? I have extreme spasticity throughout my spine, legs, neck, arms, face, stomach, and trachea. I do not know if this is the cause of my recent rapid heart rate or not. I have been to a cardiologist and he is concerned but says my heart is in great condition. When I asked him about spasticity he said, "That is a good question" but he did not seem to have an answer to how this could affect the heart muscle. Does anyone have any idea how spasticity can affect your heart?

I also have severe anemia and cannot seem to absorb the iron no matter how hard I try so this complicates things further.

Thank you in advance for your help and understanding.

Hi Yachmene, nice to meet you. I'm so sorry for your untimely MS progression/symptoms. That's the meanness of MS..just when you think it's better, it rears it's ugly head, sticks out it's tongue and says, "here I am"..:mad:

I hope your Doc has a treatment that works for you and you feel stronger soon. I've floated up D-Nile myself.:hug:

Well it is not quite Denial because I have so many things to deal with but it is as close as I can get lol. I have tried many medications and find that I am always that 2% of the population who has the rare adverse side effects to them. Almost died a few times from meds. So I am only on Zanaflex now. It still makes me so tired when I use it but I can actually function if I have to after the first half hour of taking it.

My doctor seems at a loss at this time when it comes to the new symptoms. I have had one Iron IV replacement but it has proved to do nothing as of yet. We are hoping more will help. Apprarently my levels are so low that I should not be able to walk around. One thing I can thank MS for...is making me stronger even when I feel weaker. I have faced health issues that may have been a big deal for me if I had not learned to manage my self because of MS.

This heart thing is strange. I feel as if the spasticity has entered my chest wall and I wonder if it is that rather than the heart acting up. I also am unsure if this is something to be concerned of and the doctors I have cannot give me very much clarity in this area. I ended up in the ER with what seemed like a heart attack but appears to not have been, although my blood pressure and pulse showed radical changes. I am wondering if spasticity of the chest wall can mimic the symptoms of a heart attack. I do not have a neuro anylonger because of costantly changing insurance benefits and I live in the middle of no where. I have to travel at least 3 hours to a good doctor but I fall asleep if I drive more than 10 minutes.

I dont have an answer, but have a hug for ya. :hug:

Hello Yachmene,

Cardiac symptoms are common in the conditions listed in the links below and the symptoms are often misdiagnosed as MS related or may occur in conjunction with other forms of demyelinating disease.

From personal experience, two of the four bouts of transverse myelitis that I've experienced began with symptoms similar to what you describe (heart attack pain and arrhythmia), then developed with further neuro-muscular symptoms from there.
Over the years I've learned that for many, TM doesn't always present with the classical sudden onset of numbness and lower body spasticity, but instead comes on as abdominal or cardiac symptoms.

Hughes disease is another possible reason for the cardiac symptoms and anemia/low iron absorption that you are experiencing.

Hope that you feel better soon and that the links below offer some potential for further investigation.

With love, Erika


Transverse myelitis
http://suite101.com/article/understa...yelitis-a73762

Anyone with an MS diagnosis should be tested for Hughes syndrome/antiphospholipid syndrome as it is often misdiagnosed as MS or as circulatory/cardiac disease.
It is just a simple blood test but frequently the antibody is not tested for as many physicians/neuros don't know to look for it.
http://www.hughes-syndrome.org/symptoms.htm

Lyme disease cardiac manifestations
http://www.ncbi.nlm.nih.gov/pubmed/11982302

Scalene muscle spasms & trigger points often occur with MS because of spasticity of the neck musculature.
http://www.triggerpointtherapist.com...troublemakers/

Thank you for the information I have been tested for lime's disease but the first two I had not heard of before. I have already begun looking at the links you provided. It will help to give me questions to ask my doctor. Thank you.

After researching your links I realize that I have been tested for blood clotting already due to the anemia so it would not be the Hughes syndrome/antiphospholipid syndrome but the transverse myelitis makes sense because my cardiologist told me that it seemed to be due to inflamation and my spinal cord has narrowed over the years. My chiropractor says this is due to MS and is common. I feel like I have a good idea of what to ask my doctor to look for now and if not this exact thing maybe it will get her thinking in the right direction. Thank you very much

Hello Yachmere

I am pleased to meet you, although the circumstances are not great.

I was diagnosed RRMS in 2001, and two years ago, I had some freaky heart symptoms too. I had a racing/irregular heartbeat, chest and neck pain and really thought I may have been experiencing a heart attack. I felt like there was a 'blockage' in my throat that I had to 'swallow over' - it hurt to breathe and I couldn't take a full breath, my heart was going beserk, I couldn't lay down and generally felt like cr@p. It lasted all evening, night and much of the following day.

Of course I didn't call an ambulance (scared of the old hypochondriac label on the off chance it got better before they arrived), and soldiered on until the next day - I went to a GP (PCP) and she referrred me to a cardiologist who (eight weeks later) found nothing wrong.

My neuro told me that in the absence of another explanation, it probably was my MS affecting my autonomic nervous system. Happy days!!!

Anyhow, in my experience, MS can affect the performance of your heart. Have you ever had the MS hug? That seems to be what was attributed to my experience.

Regards, and hope you feel better soon

Lyn

Welcome to NT-wish you weren't part of the exclusive "club", however glad you're here...
I've been experiencing heart palpitations, erratic BP, and chest weirdness as well as a feeling like I'm going to pass out. I ended up in the heart hospital 2 times in the past 10 months. Once my pulse dropped to the low 40s-couldnt stay awake, which was a major problem even during dinner...I'd fall asleep and wake up with my hand in my plate:rolleyes:
Anyhow, I was put on a 30 day heart moniitor and taken off of zanaflex to see if that was affecting my heart rate/BP. Lo and behold my heart symptoms eased up, everything checks out clean, and my neuro gave me clonazipam for spasms, which I am loathe to take.
My neuro suggested Botox injections sometime down the road if meds don't help the spasms. Knock on wood the spasticity hasn't been so bad the last few months...
Seems that many of us with MS have other issues that complicate things and bewilder our docs. All I can suggest is keep notes concerning your symptoms, write questions down for your doc, and be an informed patient...
Keep us up to date on what's going on-we all learn from one another...:hug:

Thank you for response. I understand what you mean about not wanting the label of hypochondriac. That is how I feel every time I have to go to the hospital and even the doctors. I have experienced the MS hug but it has been more around my ribs. I think that is what gave me the idea that it could be a symptom of MS rather than a heart problem. You do not want to run to the doctor every time I have a funny symptom if they are not going to find anything, yet you don’t want to neglect your health either. It is such a fine line. I appreciate hearing your experience. Thank you.

I have been taking Zanaflex for years I did not know this could be a problem with this med. I have been learning that many doctors do not know about this medication. It works well for my spasticity. However, about 2 years ago I had to have my apendics and gall bladder removed. I was given antibiotics at the same time for divertriculitis. Apparently the antibiotic I had to take for this was not to be taken with Zanaflex but the doctors, nor pharmacist did not know this. I took them together at home when I was alone and ended up in and out of consciousness. My sister came by to check on me and was horrified to find me in this condition. I could not function because my nervous system was under attack. She called the poison control and explained to them what was happening and what meds I was taking. This is how we discovered that we could not mix these two pills. The next time I was hospitalized they tried to give them to me together again. I had to tell them that these two pills could not mix. They were unaware of this and made notes for the chart.

I took baclofen before and it caused my throat to swell until I could not breath so that medication is out. I am unfamiliar with clonazipam can you tell me a little about it?

I am the same way about calling the ambulance. I am afraid of the label of hypochondriac. The hospital I live near does not really deal with MS very often and whenever I have had to be in the ER they have no idea what to do with me. I did not know Zanaflex could cause these types of difficulties. I take this medication so I guess I will check out the possibilities of this being a complication. Another great question to add to my doctor’s question list. Thank you.

hello and welcome to NT,

i developed palpitations and episodes of rapid heart rate. it took a few different types of monitoring devices but was finally dx'd as AF; atrial fibrillation.
it's not because of the MS but was a separate malady. i take pradaxa to thin my blood and decrease risk of blood clots, and multaq for the actual arrythmia.

i'm 63 btw and was dx'd with MS when i was 53.

i had been also dealing with anemia which was a GI related thing. but, my dr put me on Tel-Hem. after several months i'm no longer anemic.

i can see how busy you are but hope to hear more about you.

Dear Yachmene
 

Welcome to Neuro Talk. I am glad you found this forum. You will also make alot of friends here. My cousin has had MS, for 30 years, but has been for the most part doing OK with it. This is the reason why I say hello to the MS forum. Again, Welcome. ginnie:)