My Journey continued…

OK so this is a rant…Multiple Sclerosis in short means many scars; meaning that there is damage to the nerves in the brain that is irreversible and there is no cure. So you may know that nothing works in the body unless the brain tells it too and if there is damage to the nerves in the brain and a scar has formed then the signal that the brain would send (let’s say to your heart) is not received the way it should be. That in turn causes that system of the body that the nerve is connected to, to not function properly. With that being said there are 60+ symptoms for MS and each of us that are dealing with MS has different symptoms because the disease affects everyone differently, and a lot of the symptoms are invisible to people we know and interact with. 

When it comes to me I have nerve pain and my balance is off. I have trouble walking. I have a pins and needle sensation in my upper and lower extremities, very little feeling in my feet, muscle spasms in my arms & legs, muscle spasms in my sides at times (that’s called a MS hug). I have had hugs before and that hug I can truly do without. I have trouble retaining information, loss of words when having a conversation, I get lost in familiar places (which means I really should not go anywhere alone), but at times I do. I can no longer feel when someone comes up behind me. Did I say pain, yes I am always in pain. I get confused very easy especially if there are to many things happening at one time. I get severe migraines.  I have depression, anxiety and panic disorders. Sometimes I choke when I eat or drink. Sometimes I have numbness in other parts of my body. Sometimes I stutter when I talk. I can’t tolerate cold or hot temperatures. I have yet to find a balance for that. My peripheral vision is no longer there and I have optic neuritis. 

Those are just my symptoms from the beginning.  Within The last year or so I have developed dysautonomia, which is a heart disorder. My pulse has been significantly higher than it should be. It causes my sympathetic nervous system to kick in and I go into fight or flight mode. I have digestive issues. I am having trouble with digesting my food. I am sure there is something I’m forgetting,but it will come back to me.

So you can imagine  this is a lot for me to deal with; but looking at me it’s easy to say, well, you don’t look sick.” I think that’s a good thing because it means I am making dealing with MS look good. With this illness there is a list of triggers be it food, smoking or hot temperatures for example; on the food list everything I was eating on a regular basis was on there. So I had to change my diet to include mainly fruits and vegetables(which is fine because I’m almost vegetarian anyway). I needed to incorporate food that is rich in antioxidants and I did that. With the other disorder I have developed; I received another food list and on that list everything that I changed my eating habits to is on the list. Now I’m trying to figure out what am I suppose to eat?

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Geeky Nerdy HouseHead comfort…

Geeky Nerdy HouseHead comfort…

 

Response to this question…How important are clothes to you? Describe your style, if you have one, and tell us how appearance impacts how you feel about yourself.

My Journey(cont.)…

So, where was I? Oh Yeah,February 2013…

I went to see my PCP…my pulse has been running high for quite a while now. It is 120 bpm at rest reaches 170-180 walking or exercising…He has run every test he could run but the test are normal.He was trying to treat me but He decided to refer me to a cardiologist. However that appointment wasn’t until April 12, 2013.

In the meantime, other issues pertaining to MS were surfacing for instance…I started leaking urine…SO I call my neurologists’ nurse…she asked me if I had natural childbirth with my children…I replied, “yes.” She said most women at my age who had natural child birth develop urinary issues and for me to do KEGEL exercises. I have been doing KEGEL exercises all my adult life that is not the issue.

So,I schedule an appointment with me gynecologist. She says that it has nothing to do with childbirth…that it is a symptom from my MS and she would like me to see the Urinary Gynecologist in her office. She said and I quote, “_*He’s*_ wonderful.” Red FLAGS went off…I do not, I’ve never and I won’t see a male gynecologist…It is in my record. It is a serious issue for me. So I say to her, “I can’t do that.” She Replies, “Why?” I replied, “It’s in my chart why I can’t.” So, I go on to say, “If you remember I was molested from the age of 4 to 12.” “I have an issue with trust and an issue with MALE doctors in such a personal space of mine.” She replied, “You trust me don’t you?” I replied, “Yes.” She replied, “He’s the best in this field and I would prefer that you see him.” I said, “ok” reluctantly and schedule the appointment that is not until April 24th.

In the mean time, the day arrives for the cardiologist. I am being seen for tachycardia. The visit goes well and is very enlightening about certain symptoms I’ve been having every 3 months or so and no one knows what it is. These symptoms started in July 2012. All of a sudden I become anxious and numbness and tingling creeps all over my body(from head to toes). All of my muscles stiffen and my thumbs fold under my hands…I am unable to speak. I have tunnel vision. I can’t lift my arms are my legs. They are very heavy. I have to go to the bathroom and I feel like I’m going to pass out. The cardiologist says you have “Dysautonomia”. This is a debilitating condition by itself but it is also one of the symptoms for MS. OMG!!!! it has a name, I was so relieved. I couldn’t believe there was a name to this mysterious thing that keeps happening. So then all I wanted to know is can we fix it? But then I read up on it…and realize dysautonomia has the potential to be life threatening as well.

Sheesh I didn’t realize I had so much to say…I will return.

Peace & Blessings

My journey continued…

After all the migraines…my balance being unsteady…the falling…the muscle spasms. I even had an incident on 10/27/2010. I was attending my 1st Raven’s football game and during one of the field goal kicks my vision went out in both eyes and I had seizure activity. To no avail I am admitted in the hospital and the doctors still aren’t sure what the issue is. Seven years later after the original symptoms, on 6/29/2011 I was officially diagnosed with MS. It hit me like a ton of bricks.

     It seems ever since I’ve turned 40(I’m 43 now)I have been having serious health issues. In 2011 I was diagnosed with MS. It has literally disrupted my life as I knew it. I had my 1st symptoms 7 years prior to my diagnosis. It took changing doctors and my symptoms worsening to get the ball rolling for treatment.
     I suffer with pain all the time. Numbness in tingling in my arms, hands, legs and feet. No feeling in my the left foot. My balance is off. I fall down on occasion. I have trouble climbing stairs and trouble standing from a chair or the toilet. I have severe migraines. I get confused and lost in familiar places. I have trouble speaking at times and trouble finding words when having a conversation. My vision is blurry because of optic neuritis. I have lost my peripheral vision and the sensation to feel when someone is behind me. At times I will lose sensation when I sit and I get vaginal numbness.(tearing)
     Ever since my diagnosis there has been one thing after another. In May 2012 on Mother’s Day my gift was an emergency appendectomy. Not to long after the surgery I went into a relapse which eventually landed me on a psychiatric ward for major depression with anxiety/stress. This ordeal was from May -August 2012. Having surgery puts tremendous stress on your body. Surgery coupled with a chronic illness wreaks havoc on the psyche and the body.
     The next major event was in October 2012. The weekend of Super Storm Sandy. I began having chest, shoulder & arm pain. I thought I was having a heart attack. I went to the ER. {Side-Note}(this is when I first noticed my heart rate being elevated but I thought it was because of the pain I was in)I’ll get back to that. After an ultrasound and a CAT Scan the final answer was my gallbladder being full of gallstones. So, woe is me I have cholecystitis(inflammation of the gallbladder) and I am headed for a cholecystectomy(removal of my gallbladder).
     Of course after this surgery I head right into another relapse that last until February 2013. Hold that thought I’m crying now and need to pull myself together.
(TO BE CONTINUED)

In the beginning…

There is no pain like migraine pain…It even surpasses labor pain in my opinion. On December 8, 2004; I woke up with the most excruciating headache. It felt like someone was in my head with a jack hammer tearing up concrete. I was light headed and dizzy. I was also having nausea and vomiting. The migraine wasn’t the beginning of the symptoms…maybe a year before that I became lightheaded. I had episodes of dizziness and I had fallen several times. I ignored it, I thought I was just being clumsy. I was 34 years old at that time.
     I decided to go to the emergency room on December 8th. While I was at the emergency room the doctor performed a spinal tap and prescribed Metoclopramide IV for my migraine. The IV helped some but after the spinal tap the nurse said I could get up, I was being discharged. The doctor told me my spinal tap was normal. So I got ready to leave. It was to soon for me to get up. I was suppose to lay there for at least 30 minutes. To my chagrin I ended up with spinal tap headache on top of my migraine. I suffered with this headache for over a year.
     My primary care physician prescribed several different types of medicine trying to help me relieve the migraine I was having. Nothing was helping. She said, she thought it might be MS…she referred me to a neurologist. I had to wait 8 weeks for an appointment to see a neurologist. That was the longest 8 weeks of my life and it was through the holiday season. Finally the appointment to see the neurologist arrived.
     I had an MRI and the neurologist was going to go over the results of the MRI as well.  During the visit she told me that in order to be diagnosed with MS I needed to have 9 lesions on my brain and I only had 4 lesions.  She also said that it was inappropriate for my primary care physician to say I might have MS and she wasn’t a neurologist. As far as she was concerned the lesions that were on my brain were indicative of severe migraines and not of multiple sclerosis…