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I'm hoping to feel a little less alone
Hi guys. So basically, on the 26th of December, I was at work and started experiencing heart palpitations and dizziness. I didn't think much of it until it kept happening into the night and the next morning. These mild symptoms had over the next few days grown into more concerning symptoms such as weakness/numbness in my left arm and in my legs, along with muscle spasms, headaches behind my eyes, chest pressure/shortness of breath, vision changes, globus sensation in my throat sometimes, and yesterday, I started experiencing severe lower back pain that would shoot down my leg when I tried to walk. Please keep in mind that I'm an 18-year-old girl. Prior to yesterday, I had been to the ER a few times concerned that there was something wrong with my heart, but 3 EKGS showed that I was fine. I even saw a cardiologist who ordered an echo and 48-hour Holter monitor, all of which came back great. I've also had a lot of bloodwork done, that shows my TSH levels were normal, the proteins in my heart 9(like troponin and d-dimer) were at normal levels; every part of my blood they tested so far was normal. I spoke to my doctor who said I should now see a neurologist to rule out something like MS. I saw the neurologist on Friday and he told me that my variety of symptoms doesn't really make sense with an MS diagnosis but that he's been surprised before, so he ordered a MRI and EEG (which I'm still in the process of scheduling.) My doctor prescribed me 100mg of Gabapentin for the muscle spasms which has helped, and then for the new back pain she prescribed me 15mg of Meloxicam which worked for a little bit but after I woke up this morning the pain came back. Instead of shooting down my leg like before though, it radiates to my hips and the right side of my pelvic bone. I went to urgent care today and she told me that I really should get an MRI done to check for MS, but I have no idea how long that's going to take to be able to get an appointment. I'm honestly just really scared. I don't think I'm in any immediate danger (mostly because all of the ER doctors I've seen have told me so) but I don't want to be in pain anymore and I don't want the numbness/weakness to get worse or cause more permanent damage. Nobody in my life understands me either, I've been fighting with my mom so much lately because she's certain there's nothing wrong with me. Things are just really tense. I'm also home for school as I'm online for my college, meanwhile everyone is away doing their own things and keeping busy. I just feel like I'm going crazy. I'm not saying that I want there to be something seriously wrong with me, I just want to know what's wrong so I can do whatever it takes to fix it. This has really been impacting my relationship with other people, and how I perform at work. I just don't want to feel like I'm alone and going crazy anymore.
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Did they test for Guillain-Barre Syndrome?
Don’t mess around!
Don’t just rely on drugs to help you. You’re 18 and have a whole life ahead of you!Find a way to be heard and taken care of.
If you can go to Mayo, why not start there?
@jessduranttt
Ask your family and friends for help, too.
Good luck. M
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2 Reactionsi just looked that up and honestly that feels like it makes sense, I'm definitely going to bring that up to my doctor. I've really been trying to advocate for myself because my mom just doesn't believe that anything is truly wrong with me which really sucks.
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3 ReactionsYou are best advocate for your own health! Do what you need to get a good health plan with your doc. If questions still exist you can request second opinion by a specialist. You can do this!
I posted at length in your other thread. In this thread I just want to say that you need support. It is not unusual for people with health issues to see a counselor. In the absence of parental support that might be helpful for you now.
I discussed possibilities from my experience and that of my daughter at your age in the other thread. I would add rheumatology/ autoimmune testing to neurology and cardiology. Get yourself a Kardia for home EKG to document or reassure. Functional/integrative medicine and PT can be helpful.
Consider Lyme, whiplash/cervical spine issues, sciatica. You could be having separate issues or one issue with many aspects. In our experience this can improve (with appropriate treatment) but addressing it with multiple doctors and frustrating testing can be stressful and support is needed. Sounds like your heart is okay which is good news! Keep us posted!
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4 ReactionsI really appreciate all the advice you've given me!! I've just been trying to go on different areas of this site and see how people can relate or how they went about doing things, so I really appreciate everything you're saying.
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5 ReactionsYou write Very well!!! Please continue with your tests,,, Mom doesn't know your body...you know what hurts and what doesn't!!! I also take gabipentin for restless leg syndrome...I take four every night...so I can sleep.
Thinking about you and know we care!!!
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1 ReactionDear @jessduranttt, You have already received many good suggestions from people here concerning other things to ask your doctors to test for. And I agree that some sort of counseling or therapy could be very helpful for you, especially since you don't feel you are being heard at home. You are so young, and you have many years ahead of you, so you are RIGHT to be advocating for your health! YOU know your body and what you are experiencing better than anyone else... including doctors. Don't give up searching. See other doctors for second and third opinions if needed. And do ask for your doctors to test for all the things suggested. Sometimes it is a matter of ruling OUT other things to finally find a diagnosis! I am OLD.... and I learned many years ago that I have to be my own advocate for MY health. Some doctors may be more helpful than others. Some I saw had been doing the same things the same old way for years, and they were not keeping up with new advancements and treatments. My health issues were different than yours, but I continued to seek out doctors until I found some who could help me. I hope that you will do the same. You have found a good place here at Mayo Connect to be heard... and to receive input and support from others who can identify with what you are going through. You are NOT crazy. Your symptoms are real. Please know that many people here CARE.... and wish you all the best. Please keep us posted on your progress!! Best wishes! Mike
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4 ReactionsI am so sorry you've been going through this. Your experience really resonates with me. Because of the palpitations and numbness that I too have experienced, doctors have focused a lot on my heart, which doctors keep telling me is "normal for my age" (I'm 75). I saw a neurologist who ruled out MS after an MRI and an EMG. It wasn't until I saw a movement disorder specialist because of tremors that I've developed, who did a skin punch biopsy, which showed that I didn't have Parkinson's but did indicate small fiber neuropathy. Now I'm awaiting an appointment with neurologists at Johns Hopkins to figure out what's causing that. Like you, my pain has been showing up in all kinds of places at different times. I have symptoms that seem unrelated, but in the context of a disorder that affects your entire nervous system or an autoimmune disease, it makes sense that your entire body is affected. I've found some ways to help deal with the constant pain, and the more I learn, the more I understand what's causing all these disparate symptoms.
I've educated myself as much as I can about my symptoms and the various diagnoses that I have gotten. Doctors aren't crazy about it when I say that I've been researching, but I stick to well-vetted websites, articles, and YouTube videos. That information has helped me ask the right questions and push back when I need to.
I know it's really hard to push back when doctors say it's stress or anxiety, especially when you're worn out from the pain and tired of dealing with the lack of understanding and support from friends and family. (I hear you on that one.) You are NOT alone, though. You're in the right place. Mayo Connect is a great place to find support and information. I particularly like the fact that it's moderated; I tried a few Facebook and other online groups at first that fanned my anxiety, something I can do on my own!
Remember: You are not making this up. Your experiences are real. The most important thing to keep in mind is that there is help for what you're going through. Hang in there! We've got you.
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5 ReactionsEven if you were tested for Lyme disease, get a repeat test about 3 to 4 weeks later. I was told it should be repeated by rheumatologist with Western Blot test. Keep trying to find out what is causing your symptoms. Also, keep a journal of your symptoms. I hope you get some answers.
Also if you have any positive bands that are "Lyme specific" on a Western Blot it may be positive. The CDC wants a certain number of bands for both IgM and IgG and Lyme doctors will go by one specific band, or sometimes even by symptoms. Sometimes the more serious Lyme symptoms can show up long after a tick bite.