Undiagnosed and rare conditions
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Hi, I'm MJscheper. I have an undiagnosed condition and need support.

MJscheperMJscheper Member Posts: 4 Listener

Hello everyone. I hope you are all safe during these weird times. My name is Myron. I’m a 27 year old (young) man living in the Netherlands. First of all, I want to apologize in advance for my English. It isn’t the best, but I hope my story is somewhat understandable. Second of all, it’s a long story, but I want to be clear as possible. Sorry for the long read. 

I have been sick now two years. I really can’t believe it is that long already. And the fact that im speaking in terms of years now makes it certain for me that I’ll never be healthy again. Days became weeks, weeks became months, months are now becomming years, and years will probably be forever. How long (or not that long) that may be. Sidenote: I have never been sick before.

It all started out of nowhere on february 25th 2019. Literally out nowhere. I had worked that day, and after watching some TV and playing a videogame, I decided to go to bed early that night. I had four more days of work left to go before I would go on a holiday to Russia. 

When I nearly fell asleep I suddenly started to feel very strange. I became extremely dizzy, weak, a lot of pressure on my chest. I tried to calm myself down by drinking some water and putting my head out of the window for some fresh air. I was almost tempted to call an ambulance. Somehow, after a couple of hours, I fell asleep. It was like an attack. 

The next day, when I woke up, I was hoping for everything to be fine. But it wasn’t. And from that moment onward, it has been getting worse and worse. Up till a point I am nearly bedridden. 

It all started with the things mentioned earlier. It really came out of the blue. No signs or weird things in the days or weeks prior. No matter how hard I think about it. Everything was going completely fine. The dizziness and fatigue/weakness were the most prominent symptoms the first few weeks. After that my vision got blurry once and I started to experience problems with my digestive system. Nausea, vomiting, pain in stomach, you name it. This went on for a while. 

In the meantime I visited my GP several times. Bloodwork came back normal. Medication for the digestive problems did not work. Finally, my GP sent me to see some specialists after I started experiencing muscle twitching on top of all the earlier mentioned symptoms: A neurologist and a Gastroenterologist. 

They both ran some additional bloodtests (allergies, Lyme’s, CK) and had me undergo some scans (head and chest). They also performed a gastroscopy to look inside my stomach. They found some inflammation, but they said it was due to me vomiting so often. I should go away with another type of medication they said. The other tests came back pretty normal. 

In the months following I became sicker and sicker. I wasn’t able to work anymore. I started to experience problems when walking. It felt like I was walking in water at waistheight. Then my legs started to burn constantly (hasn’t gone away since). Especially my calves. And the pressure on my chest gets worse and worse. I now wake up out of breath each time. 

I visited some more specialist over the course of two years (upon till now). Most of them didn’t want to run tests. Saying that I am young and healthy and alot has been done already. And that it is in my head and what not. 

Long story short. I am a mess. I cannot function. I lay in bed most of the time. My family and girlfriend don’t know what to do anymore. I don’t know what to do anymore. My GP does not help. He send me to a psychologist and said that i might be all in my head. 

Is there anything I cant do? Going private? Does anyone recognize these symptoms: 

  • Pain in the chest when expanding. 
  • Out of breath (even after sleeping). 
  • Burning legs, worsens after walking.
  • Muscle twitching all over the body, usually after tensing or moving a muscle. 
  • Extreme fatigue. Intolerance of exercising.
  • Dizziness when sitting upright, standing or walking. 

 Please, I want my old life back. I can’t take this anymore. Don’t want to live like this. 

Replies

  • Cher_ScopeCher_Scope Posts: 4,417

    Scope community team

    edited March 25
    Hi @MJscheper and welcome to our community.  I'm sorry it's under these circumstances we meet and I want to firstly thank you for sharing what must be a traumatic time for you.  

    Unfortunately, our community is not professionally trained so we would be unable to offer any medical advice in terms of a diagnosis/treatment but we can definitely give you support.  Have you considered changing GP's and seeking a second opinion?  This might be one step to think about if you feel that your concerns aren't being taken seriously and you've reached the limits of what your doctor can offer.  Although it does sound like they've previously been proactive in terms of testing and referrals, if you have the intuition that something still 'isn't right' then it's important to have your voice heard.

    I understand how this could be impacting your emotional wellbeing and wondered if speaking with the psychologist had helped at all?  Adjusting to life with a chronic illness is hard, even more-so if it remains undiagnosed and I truly empathise with your feelings of frustration.  Some of our other members are also living with an unknown condition and you can read their stories in our Undiagnosed and rare conditions category (I've moved your thread to this category too).  While here in the UK, the Rare Disease UK organisation has a website to help those navigating the same.  Maybe there's something similar over in the Netherlands?

    Please let us know how you get on and I have everything crossed you can get some answers soon.  
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  • Cher_ScopeCher_Scope Posts: 4,417

    Scope community team

    edited April 1
    Hi @MJscheper

    I'm just checking in to see how you're keeping? I hope things are okay and be sure to let us know if you need any further help.
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  • MJscheperMJscheper Member Posts: 4 Listener
    edited April 22
    Hello Cher,

    Thank you very much for replying. I did not get a notification of it, so I thought nobody had replied. 

    Changing GP’s isn’t really possible here. There is a shortage of GP’s, so they only take people in who have moved here (in the Netherlands you have the right to be assigned a GP in the municipality you live in). 

    My GP has now sent me to a rehabilitation centre. The people there are trying to convice me that I have a conversion disorder. The frustrating part is that I know that is not the case. So these sessions will not help me at all. Just a waste of time. 

    Meanwhile the last few weeks have been hell for me. My symptoms have increased dramatically. I can’t do anything. I am literally gasping for air all the time. Even when lying down. When I stand up, I feel so uncomfortable and dizzy. My muscles hurt, burn and twitch. My GF works during the daytime. She, and my family, don’t know I am suffering so much these days. I don’t tell them. When she’s home I put on a mask. Which is so unbelievably hard. It is so hard seeing everybody living their lives. 

    I am 27. 2 years sick now. Perfectly healthy before. No doctor has been able to diagnose me. And now I feel like they don’t take me seriously anymore. My whole life is gone. I never would have imagined that things would turn out this way. I just want to feel good again. My old job. Playing football. Snowboarding. Traveling the world. Parties. It is all over. I will never feel good again. 

    I have all the symptoms of MS, but no lesions. The neurologists I have visited don’t want to conduct further testing. No spinal tab, no MRI of the optic nerve, no provoked something. 

    I am so tired. I can’t take it anymore. I am not suicidal, but I can’t live like this another two years.  


  • Tori_ScopeTori_Scope Posts: 5,644

    Scope community team

    Hi @MJscheper. I'm sorry to hear that things have become worse for you. 

    Firstly, I'd encourage you to be more open with your girlfriend and family about how things have progressed. I know it can be difficult to be honest about how much you're struggling, but ultimately they should be there to care for you and it's important they know what kinds of symptoms you're having. 

    You said in your first post that you were wondering about going private, is that a possibility for you? I don't know much about the healthcare system in the Netherlands, but could this help you to perhaps get another opinion from a different neurologist, some more tests and scans, or a referral to a different kind of specialist?

    I'm glad to hear that you're not suicidal at the moment, but I can appreciate that this must all be very difficult to cope with. I'm not aware of all of the helplines that are available in the Netherlands, but you might like to give this one a call if things ever get too much. 
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  • MJscheperMJscheper Member Posts: 4 Listener
    Hello Tori. Thank you very much for replying! It amazes me to see that people, who might face certain problems themselves, take time to reply to complete (suffering) strangers. I can assure you that I am glad someone is responding. 

    Things have definitely become much worse. That is an understatement. Every time I think I hit rock bottom, it still manages to becomes worse. The scary part is that I don’t know where it will end. Symptoms either increase (get worse) or a new symptom pops up. 

    You are right about being more open to my GF and family. But I am so scared of losing the first. What if she can’t take it no more? It has taken a toll on her as well. Furthermore, I don’t want my mother to endure even more stress than she has. She knows I don’t feel well, but her getting emotional (crying) when I am being honest makes me feel even worse. I guess I need to find a balance. I don’t know. 

    Well, going private is certainly possible. But it costs a lot of money. Money I don’t have right now. And even if I had, I would not know what to look for. You can “order” a lot of tests. For example MRI’s. Or bloodwork. But there are so many options. I can undergo a full bodyscan (costs around 2000 euro), but you can’t see everything with a scan. I’d rather get multiple referrals to specialists (public) from my GP. Which are covered by insurance. But my GP is not cooperating at all. 

    He is sending me to a rehabilitation centre while I am getting sicker and sicker. 4 months. And after he might want to talk about sending me to a specialist again. I can’t wait that long. I want to change GP. 

    It is very difficult. Sometimes I wonder how I get up in the morning. But I guess I still have hope deep down. I will never give up. Life is too precious for that. 
  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    Hi! Obviously I am not a professional. I am not offering medical advice.

    But I'd like to draw your attention towards Orthostatic intolerance and Postural Orthostatic Tachycardia Syndrome. You mention dizziness when being upright. This is a classic sign of PoTS or orthostatic intolerance. It gives you symptoms when upright that relieve themselves when lying down. My cardiologist has a youtube channel called York Cardiology - I suggest you take a look at the videos on PoTS and dysautonomia to see if you feel it matches your experience. It also causes exercise intolerance. However, PoTS causes palpitations, which I don't see you mention. And it definitely does not account for all your symptoms. But it may help explain some of them, especially the dizziness on being upright.
     
  • MJscheperMJscheper Member Posts: 4 Listener
    Hello Francis. I hope you are doing well in these weird times. Thank you for replying. I really appreciate it! 

    I have looked into PoTS and orthostatic intolerance before. I have to say that I seldom experience palpitations. Occasionally after drinking a beer (I don’t drink anymore, except when my favorite football team plays in the weekend, then I allow myself one beer), I experience it just a little. 

    My heart has also been examined via an EMG. Results came back fine. On top of that, my blood pressure and heart rhythm haven’t shown any abnormalities over the last two years. I do however experience breathlessness at the end of the day and at night. So I don’t know. Feels like the muscles I use for breathing are too tired at the end of the day or something. 

    For me, muscle twitches and burning legs indicate some kind of nerve damage. When I squeeze my eyes for example, I always get a reaction (in the form of twitches). Same goes for my tongue and legs. Well basically it is widespread. 

    I still think it might be MS. But the two MRI’s I’ve had did not show any lesions. Maybe I am overlooking something. 

    Lyme, Lupus, Fybro or Thyroid (or maybe a combination) might also be possible causes. However, there is always a thing which does not match the usual picture. 

    Bloodwork for Lyme came back fine. I haven’t been bitten either I believe. I have no rash (which is typical for Lupus). I don’t really have pain in the tenderpoints (Fybro). So yeah, it really is a puzzle... 

    Do you have any other suggestions? Thanks again for replying Francis. Means so much to me laying here in bed alone during the weekend, while my friends are all enjoying themselves. 



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