Does anyone else have this?

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BFogg
Regular Member


Date Joined Feb 2014
Total Posts : 56
   Posted 7/12/2014 6:43 PM (GMT -6)   
I've recently been having trouble holding my neck up straight, which is unusual considering I'm only 21 years old. It isn't all the time, but when it does happen it feels like my neck is a limp noodle. When it happens my "brain fog" seems to be much worse and I feel out of sorts. It's hard to describe. It makes me feel helpless.

Along with that I've been getting terrible chest pains that seem to mimic a heart attack. Went to the ER, the doctor said both my EKG's weren't normal but that since I'm young they're not worried? How the heck does that make any sense? Instead of demanding answers, I left feeling down and confused. People look at me and assume since I'm young that there's nothing wrong with me even though I have hypothyroidism and SLE. I'm honestly convinced almost every doctor I've seen in a hospital has looked at me and completely ignored my symptoms due to my age.

I can't take the sleep paralysis that hits me the moment I lay my head on my pillow, or the intense muscle spasms that follow there after. And don't even get me started on the electric shock sensations I get. I'm starting to feel like I am slowly dying everyday. I know it sounds dramatic but we all know when something isn't right with our bodies, you know? I just need to know if this is normal. I just need to feel like I'm not all alone.
Diagnosed 2014 Hypothyroidism and Lupus
Currently only taking 0.025mg of Levothyroxine
New to it all and completely freaked out!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/12/2014 6:52 PM (GMT -6)   
You really need to go see a heart doctor and a neurologist. This sounds very serious.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

BFogg
Regular Member


Date Joined Feb 2014
Total Posts : 56
   Posted 7/12/2014 9:47 PM (GMT -6)   
I have a cardiologist but he's on vacation till the end of thus month and my neurologist costs $170 per visit which unfortunately I cannot afford right now.
Diagnosed 2014 Hypothyroidism and Lupus
Currently only taking 0.025mg of Levothyroxine
New to it all and completely freaked out!

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/13/2014 12:38 AM (GMT -6)   
BFogg:

I'm sorry that you're having such a difficult time with your health, especially at such a young age. I like Joy am going to give the exact same advice, you need TO SEE a DR ASAP. I totally understand what you're going through and I can say this to you that you're not alone. All of us on this forum have faced major challenges.

You're lucky that your got a diagnosis at your age and treatment. I started showing some signs of SLE when I was like 17 and it was ignored. I got married at age 20 and started traveling with my hubby who was in the military. Well, when I was 23 years old (by this time was really sick) and I had an Air Force Internal Medicine Doctor tell, "you know I think you might have lupus.

They did NOTHING for me and it took them 13 years before they FINALLY said YES I do have SLE and started treating me. I believe that's why I'm so sick and nothing works for me. I've tried everything but Gold Injections and NOTHING has stopped my flares or progression of my disease.

The reason I tell you this is that lupus can affect your heart and once damage happen to our organs it's almost impossible to reverse the damage. I understand that you like and trust your cardiologist, but if he's not going to be back until the end of the month, please reconsider and see a different cardiologist. I've had both pericarditis and endocarditis, both of these conditions, IF, left untreated can be VERY dangerous to the person with the conditions.

Now, I'm not saying this is what you have, but if two EKG's weren't normal and then you mentioned not being able to hold your help up you need to be seen ASAP. As far as seeing a neurologist some doctors have a sliding scale for the cost of appointments. It's based on your income, or some Doctor will see you and allow you to make payments.

I truly believe being seen sooner rather than later is very important with the type of symptoms you're having. I totally get that you're feeling overwhelmed with everything that's hitting you and how you feel as if no understands it, and that you're the only one experiencing stuff like this, but you're not.

Most of us here have gone thru so many symptoms and issues. Some of us have been told multiple times well it's in your head and you need therapy. Or we're lazy, or if we'd lose weight, or eat better. I understand how you felt with they sent you away from the ER w/o treatment. That happened to me so many times over my 13 years. It happened so much so, my daughter who is 21 is greatly affected by it. She refuses to go to the doctor even for a yearly physical.

Please, go see a Dr ASAP, and let them figure out what's happening with you. You can come and vent here everyday if you need or ask questions of us. You haven't mentioned if they are giving you any medications to control your lupus, what are you taking for your Lupus? If you're not on medications you need to be, and if you are on it, you may need an adjustment. It sounds like you're flaring and your medications aren't working. I'm not a Doctor but my experience would lead me to believe that.

Hang in there, we're all pulling for you here and this is a great forum we help each other all the time here. I hope you take both Joy's and my advice and go see someone today for these current symptoms you're having. Please let us know how you're doing and if you saw someone and what did the say.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

BFogg
Regular Member


Date Joined Feb 2014
Total Posts : 56
   Posted 7/13/2014 9:58 AM (GMT -6)   
The sliding fee is actually $170 for my neurologist and I'm currently not on any medication for lupus. I have an appointment on the 23rd of this month with my new rheumatologist who is supposed to help me out with that but I just realized I also have an appointment with my cardiologist on the same day just an hour apart. So now I have to figure out which one is more important to go to, which is quite the toss up since my heart is important and so are all my other organs that are being affected. And the only way to see someone today for it would be the ER, and they've proven useless unfortunately /:
Diagnosed 2014 Hypothyroidism and Lupus
Currently only taking 0.025mg of Levothyroxine
New to it all and completely freaked out!
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