Ptsd And Multiple Sclerosis

[EvenStrongerNow]

I posted this here rather than my trauma diary because I need support.

I feel a little angry over the last couple of days. I'm not sure why but I'm choosing to allow it rather than repress it. This is probably why:

I have some health issues that are coming up. It is part of my trauma. It is very scary health issues that I have been in remission for so long that I thought I would be an exception. Maybe my body has just decided that I am ready to deal with it now . . .I don't really know.

I have denied it for so long. I had a very rough years from 2007-2011, mostly 2008-2011. I was sick all of the time and even had colitis attacks.

In 2007, I woke up out of bed one morning and could not feel my legs. I stepped down and then fell over. I also experienced my first mental blank at a bar/nightclub. I also lost my bladder all over the kitchen floor during that time period. I rationalized it away.

In October of 2009, the left side of my body went weak while in a grocery store. I went home to relax. That night, I went to sit down at the dinner table. I looked at the chair, got dizzy and then completely missed it. Some other things happened.

In February of 2010, I went numb on the left side of my body and I felt so confused, I didn't know where I was, who I was, and couldn't remember seeing the doctor. He ordered an immediate MRI and they found two lesions on my brain. Two months later, I was choking on my food and I was hospitalized for three days where they found two more.

I'll never forget that day. I was sitting in the bed the first hospital visit. I heard the doctor going around and drawing the drapes open and shut at different people's beds. She gave them each either bad news or good news. I felt so much anxiety. When she got to my bed, she opened the curtains, came in and shut them. She started asking me all kinds of questions to which I answered "yes" to.

She said, "We are really concerned that you have early onset Multiple Sclerosis." I'm starting to cry as I type this, but I am holding it in because my husband is right here and it's already so very hard for him to deal with--all of this stuff.

Anyway, when she said it, I remember the exact tone of her voice. I also remember vividly my vision blacking out. I was still awake and I was still there but I was just gone. I was traveling down a black dizzy tunnel all the way to my stomach on the inside. I felt like I dropped through existence. It was a very scary experience.

All kinds of tests were run to rule out other things that entire year and then I started having issues with colitis like attacks so the focus became that for awhile. At the time, I was too sick to work and got laid off, losing health insurance.

Taking a deep breath. So, the last time I had anything serious happen with this was in 2011. After that, 95% of my symptoms went away. Every now and again, I will have a three day period where I have to force relaxation, etc to get through pain and other things. I've been in denial for so long. I don't want to believe it's real. I don't want it to be real. The last couple of weeks, I have been experiencing dips in consciousness, a lot of cognitive decline, some weakness, and some balance issues.

I really wanted everything to just be stress and only stress--that my body was just reacting to stress and I completely repressed the idea of brain lesions. I can no longer. They are real and they don't just get there in a young woman's head having never had a brain injury of any kind and with other things having been ruled out. I was diagnosed three times with "Probable Multiple Sclerosis". It is real.

I didn't want to get the spinal tap. I was too scared. I wish I had, but maybe back then, it wasn't the right time. Maybe now with having health insurance again and being in a better place in recovery, maybe now I can handle it. I found an MS specialist through Cedars. I will go this month to get another MRI and the spinal tap that I've been putting off for so long.

I'm so scared.

Thanks for listening to my share.

 

[Echo]

@EvenStrongerNow - you have been so brave to post this. You have so much on your plate. It is better that you know the truth and can then get appropriate help. I really hope it is not as bad as you think.

Wishing you all strength, support and hope. Keep talking to us. I hope someone here has been through something similar and can offer you assurance and comfort.

 

[a3a2]

I'm so sorry you are going through this, StrongerNow. I am glad that you are going through the testing. I always think it is better to know your enemy.You can better equip yourself to fight.

Are you at a good hospital? A reputable hospital? If not, please push to get to one..

I will be thinking of you, and awaiting an update.

 

[AngelKeeperJ]

Good for YOU, (((EvenStrongerNow)))!! Choosing to let out your feelings rather than holding them in. Repressed feelings ALWAYS find a way 'out', usually in bad ways!

I will thinking of you, praying for you, and sending you positive thoughts and caring about your feelings! You sound very strong, and that is what will get you through whatever is to be. Accepting your strengths, and using them is a gift.

Blessings to you,
J

 

[EvenStrongerNow]

Thanks :) I am in a far better place then I ever was back then. When symptoms started returning, I felt so much impending doom and I started reliving. Naturally, but back then, I also was with a Psychopath who made me feel like I was making it all up, who made me feel like such a burden. And I had so much other trauma going on that it was impossible for me to try and work through everything. Maybe the denial was really just a self protect thing.

I am feeling a lot more positive about this. I spent so much time in 2010 educating myself about MS so I know how to get treatment this time. Also, I have such a great man in my life and a great support system. Back then, they wanted to put me on disease modifying drugs. I chose not to because I hoped I would be in that percentage of people who only experienced an isolated attack and then never again. I was on like seven different medications at the time like Neurontin, Buspar, Welbutrin, Prazosin, Prednisone, etc. It was an awful lot and I couldn't see adding more.

Also, I was really scared that if they were wrong about the diagnosis, I could get very very sick from the Rebif, etc. I was in a lot of denial back then. Funnily enough, I had a boss in 2004 who has MS. I watched her go through it and we are still best friends to this day. I have seen her go through it and I've also seen the example that she has set. When I first told her about it, she could not believe that I too was experiencing it. We both wondered if it's the reason why we met. She helped me so much during that time over email and phone.

I just found an MS center at Cedars Sinai in my area. There are neurologists there who are in my health insurance network. I'm waiting for tomorrow to schedule an appointment, but I also have to work on getting my medical records and MRI CDs from John's Hopkins hospitals in Maryland. I left all of that stuff behind when I escaped from my ex. That's where I went through it at, in Maryland. It doesn't help my mind knowing that John's Hopkins are like the best doctors in the country, but still, they could still be wrong. They checked things from Lymes to HIV all the way to vitamin deficiencies and couldn't rule out MS, but still, they could be wrong. That's what I keep telling myself.

 

[AngelKeeperJ]

No matter what the doctors EVER predict, it depends on the patient, and how much they believe they can help themselves.

I was told my baby girl would be a 'vegetable', and maybe live until she was 3. Well, she was FAR from a vegetable, was love in a bundle of joy and blessings. She lived until she was 11, and taught me how to be the person I am today!

It's up to you, to trust your instincts, and NEVER GIVE UP! You inspire me!!

 

[pamcoco]

Hi EvenStrongerNow:

I completely relate. I too have serious auto-immune disease that effects not only my daily functioning but my moment to moment functioning. I have some similar symptoms, to name just a few: neuropathy, cloudy thinking, forgetfulness, depression, chronic pain and severe vertigo, a symptom of 'auto-immune inner ear disease' which is swiftly making me permanently deaf.

I have drop attacks and hit the ground, similar to fainting, but I am conscious. Once I hit the ground I have to crawl to safety and sleep for several hours. My immune system is killing my inner ear and although I was once a ballet dancer with uncanny balance and hand eye coordination, I now trip, run into objects and misjudged tasks all day, everyday. Like you, I miss the chair.

It turned my world upside down and isolated me and I have no one to talk to about it, so I can only imagine what you are going through!

The anger, fear and trauma you feel about the transformation of your body as you once knew it, is completely appropriate and shows good coping skills!! What you are going through is simply awful and plain terrifying. And no matter who you are around, you are going through this deterioration alone. Like there is no way to explain ptsd to the normie, there is no way to describe serious illness to the healthy.

I think you should be mad, frightened, upset and heartbroken. You are watching yourself deteriorate. I viscerally felt the same emotions reading your post. I guess everyone experiences deterioration with age and time but you are having aspects of your physical and mental functioning pulled out from under you without warning or pace. You are experiencing loss of the most simple things in life, most people never have to think about, like sitting down.

I want you to know that I am so very sorry, I cried when I read your post. While our diseases are different, I totally understand and feel your pain. I am terrified too. I am alone, without any friends or family. Last week I hit the ground at my storage facility where it is 20 degrees and my only options to get home were to somehow make it to my car and rest until I could safely drive, or crawl all the way home, through the snow.

I wish I could help in some way. I would like to hear more about your symptoms and experiences, if you ever want to chat.

The only peace I have found through the loss of my physical health, like the loss of my mental health, is maybe I can impact one person to question their assumptions about the "crazy", the sick, the weak. I have been told many times that I am creating my illnesses, ptsd, depression and auto-immune disease. I've been told that I am a hypochondriac, making up ailments in an attempt to receive attention.

Maybe you have experienced something similar, but if my mental and physical ailments are self created in order to gain something, why is it I am completely alone? It certainly has not successfully brought me accolades or help.

Be kind to you and forgive yourself for perhaps earlier signs of mortality than others. It means you are special.

Pamcoco

 

[EvenStrongerNow]

Thanks so much everyone. Your support means the world to me. :hug::hug::hug::hug:

 

[nomedic1]

Just know we are here if you need support

 

[Echo]

@pamcoco - I am so sorry to hear what is going on for you, too. I hope you also find support on the forum.

 

[EvenStrongerNow]

Hi Pamcoco, so sorry people have treated you that way :( My father and my ex treated me that way. I've never had health issues until that so it's like, "What are they talking about?"

I got to a point when someone said, "It's all in your head", I'd say, "Yah, it is and I have the MRIs to prove it. See the lesions?" loll

You have helped. Sharing your story helped me know that I'm not alone. And yes, I would love to chat about it. I'm not having as many symptoms as I used to. The cognitive decline is probably the scariest of my symptoms. My mind is like ....well, I love my mind :D I can't remember names or faces. I have to read things a few times to comprehend. I slur words, forget words a lot, forget how to spell, forget how to do simple math, forget what I was going to say a lot, forget where I'm going, leave the refrigerator open, the water running and the oven on.

There is a lot. I know that I'm still very smart, but I use to be so much sharper. Cognitive decline has been super scary for me. When stuff first started happening, I was like, "What do you mean I can't control what's happening in my own damn brain!?!!"

I've learned to just deal with the bodily stuff.

When it gets too bad, the pain, I use heating pads and just lay down. Nothing else helps.The neurontin I was on in the past really helped the pain, tingling and numbness, but the side effects just weren't worth it. The heat makes other symptoms come out and doesn't relieve it for very long but it is so worth it to alleviate the pain for minutes at a time. I can't take hot showers or baths or my vision gets blurry, I get extremely fatigued and my legs become like jello to where I need help getting out and with walking.

I've learned how to compensate a lot over the years. I eat slowly so I don't choke on my food and stay away from crumbly products that can be inhaled. I shift my weight when my body gets tired and sometimes, I have to just sit down because holding myself up causes a lot of fatigue. That's another one, the fatigue. I've learned to cope with that a lot too over the years.

Sometimes when I wake up in the morning, I have the most constricting pain across my rib cage. It hurts through and through...so painful and I can't breathe. I experience electric shocks in my feet and in the back of my neck. Those suck. The next shocks is excruciatingly painful. I'm glad it only happens once in awhile. When I try to shave my arm pits, when I look at my underarm, I have to wait until my vision stops blurring so I can see. The same happens when I am trying to tweeze my eye brows. I see double a lot and end up making my eye brows bleed. Also, I have a lot of digestive issues.

I drop things a lot. My hand locks up when I'm trying to open jars and when I'm trying to sleep at night, the left side of my head feels like there is something buzzing up and up my head, like a tingling sensation. This used to freak me out because I thought there were like microscopic bugs in my head. I would lie awake all night freaking out. This went away with two increases in Neurontin back then, but then I realized after coming off of it that they can't be bugs (lol) because a bug would not crawl up, then up, then up all in the same start and end point. That's impossible.

I've learned to deal with this by thinking and thinking and just ignoring it.

The balance issues and unsteady gait is what they called it. Sometimes I walk around almost like a drunk person, but I've learned to just laugh when I fall or something. I've fallen down the stairs and I've fallen after getting out of bed and cracked a rib before. The roller coaster emotions I've learned to deal with, with having PTSD. I didn't know how to deal with them back then. One minute, I was screaming in anger and the next, I was crying at the littlest things and laughing at inappropriate times uncontrollably. That scared me the first time it happened. Someone said something (not a joke), I laughed and I couldn't stop laughing.

A lot of the coping skills I've learned with having PTSD have helped me deal with other stuff like the emotions, anxiety, etc. Mostly, "OK. This is happening but I choose to take care of myself rather than just giving up and I'm probably not going to die." helps a lot.

I just exhausted myself :eek:

Seriously, thank you for sharing your story.

 

[pamcoco]

Thanks for your sweet note when I was supposed to be comforting you!

I don't know anything about MS, except that I recently learned it is auto-immune. Ironically there is an uncanny simlarity in our symptoms from what you mention. I haven't been able to see doctors in some time. But my last diagnosis was celiac, arthritis, and the inner ear disease. But I suspect I have Sjorgens as well. Especially some of the cognitive problems you mention, are very similar to my own, but not even close to the severity.

I know that my mental functioning, or lack there of has FREAKED me out. I cannot imagine the horror you must experience at times. I know my mental challenges have been much harder to recognize than the physical, like I can't remember that I have memory problems ;-) But at some point about 3 years ago I could no longer dicifer the aches, pains and abnormalities in my body. I am numb, or at least checked out. I don't recall feeling good so I now only feel the extreme.

You seem to be incredibly aware of what's happening to you, and I give you enormous credit for that. It isn't easy to be in a body that hurts and is failing. Actually you sound incredibly centered and mature about your choices and coping skills. I am still in the temper tantrum phase, acting like a whiny baby more often than I would like.

You are doing amazingly well even if you don't see it!