1.5 years of misery

New diagnosis and before diagnosis
1

Hello everyone,

sorry for disturbing, but I really don’t know what to do anymore. I’m a 26 year (soon to be 27) old young man living in the Netherlands. I stumbled upon this forum by accident. It is by no means my intention to waste anyone’s time here, but I have been feeling sick for over 1.5 years now. And I just can’t take it anymore. I can’t live like this. I was wondering what others might think about my story. I’m pretty sure I’ve got MS, but I am stuck. In short, at this point my GP and neurologist don’t think it’s necessary for me to undergo MS-related test. So far the only test I’ve gotten was a MRI of the brain, just a few weeks after my first symptoms occurred. No abnormalities were seen. Furthermore I have had a lot of blood test (no abnormalities), a CT-scan of my lungs (same story), an echo of my belly and a gastroscopy.

I became sick all of a sudden (at least I can’t seem to remember potential signs in the weeks before that particular night). On a random mondaynight when I was laying in bed. I became very very dizzy out of nowhere. It got worse over the next few days. Eventually it got a little better, but in the months that followed I started to experience other symptoms. They came in episodes (I don’t know how to describe it). So the symptoms I experienced at that moment would worsen in a matter of days, and another symptom would pop up with it. Added to the collection. This has been going on for months. In between I sometimes felt a little bit better. But now my symptoms don’t seem to subside anymore. I now have muscle spasms, tinglings (in my legs, they feel like ants and sometimes it burns), blurred visions, coordination problems, tight feeling around my chest, problems with swallowing and nausea (like my diafragma is not working well), numbness in my left cheek, pain everywhere (including headaches) and electric shocks going through my nerves.

I’m lay in bed most of the time. I can’t do anything without being in such a discomfort. My GP thinks its all in my head. I know it’s not. I lost my job, my social life is gone, and i’m afraid of losing my girlfriend if this keeps on going. I just can’t take the misery anymore.

Is there anyone out there who got advice for me. Why don’t they repeat the MRI of the brain, make one of the spinal cord, conclude a lumbar punction?

Thank you for reading, and sorry for my bad English.

2

Hi You are in a state are you not?! Tell us what was the Neurologist’s verdict? You had a clear scan so there would be no reason at this point to be ordering a second one/lumbar puncture etc. What did he say when examining you? Did he pick up any clinical signs that would be compatible with a neurological diagnosis?

You seem to be experiencing a lot of symptoms one after the other and you describe yourself as being somewhat bedbound. Have alterative diagnoses been considered here and been discounted? I am thinking ME/Fybromyalgia type illness. I also wonder what actual day to day supports you have to manage your life as it is at present. The emphasis needs to be on you getting better and moving forward to a point where you can better manage and make appropriate decisions. One of those might be regarding your relationships with your GP and Neurologist.

3

Thanks a lot for your response. That’s very kind of you. Yes, I am broken. I feel so miserable like all of the time. I really need an answer after all these months. My neurologist says that the chances of me having MS are slim. She keeps refering to my clean MRI of the brain, which was conducted like 3 weeks after my first “attack”. The weird thing is (to my opinion), is that she did pick up some little abnormalities (especially on my left side, less strenght), but she says it’s not enough for her to conduct futher testing. Yes, that is true. I lay in bed most of the time. Mostly because of my poor coordination/balance and severe fatigue. I forgot to mention that my vestibular system has been examined aswell, with no abnormalities. My symptoms get worse and worse with each “attack”, and another symptom usually pops up with each attack.

i am now being tested on Lyme. That’s the only thing left. After that, my GP says I should give it a rest and visit a psychologist. Which i find absolutely ridiculous, since I can’t even walk properly and my muscles twitch, burn and are numb all of the time. When is this nightmare going to end. Everything was going so well. I feel like my life is ended even before it has seriously started.

4

Is it possible for you to ask for a second opinion?

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I don’t know. I really want to. But in our country your GP or specialist needs to give permission to visit another specialist. And my GP isn’t cooperating at all. Other GP’s aren’t accepting new clients right now. So I’m stuck. I feel like i have to wait untill things get really bad before they take me more serious.

6

Hi, it doesnt sound like you are being looked after or listened to fully.

It took 22 years for me to get a correct diagnosis of Spinal PPMS. I have seen 17 neurologists and the last one was unbelievably thorough.

My only lesions are on my spine…so all the brain MRIs never showed it.

There is obviously something not right. And suggesting you see a psychologist really isnt on!

I wish I could offer more advice.

Boudsx

7

That’s exactly how I’m feeling. They usually focus just on one complaint/symptom. Wow, 22 years. Must have been a hell… Im sorry to hear that. Hopefully you’re doing good or better now? I called my neurologist yesterday. Finally I have convinced him to run some more tests. They are going to make an MRI of my entire spine (from the neck to lower back) now.

It hard fighting all these symptoms, but it’s even harder to fight all of the people who doubt you.

thanks for the reply, i really appreciate it. Praying to get a diagnosis soon

1 Like
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Good to hear ther are listening to you and running some more tests. Good luck, and let us know how you get on.

9

Thank you Chris. The people on this forum are so helpful. However, i just found out that i’m going to get a MRI of my (entire) vertebral column on sunday. And not, as I was expecting, from my spinal cord. I think only the latter is useful for diagnosting possible neurologic disorders right?

I’m completely devastated at this point. My eyes hurt, my legs are either numb or on fire, my muscles twitch continuously. And i am out of energy. Also seeing my GP tomorrow. She and my mother will probably say I have to visit a psychologist. And that will be it.

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Thank you Chris. The people on this forum are so helpful. However, i just found out that i’m going to get a MRI of my (entire) vertebral column on sunday. And not, as I was expecting, from my spinal cord. I think only the latter is useful for diagnosting possible neurologic disorders right?

I’m completely devastated at this point. My eyes hurt, my legs are either numb or on fire, my muscles twitch continuously. And i am out of energy. Also seeing my GP tomorrow. She and my mother will probably say I have to visit a psychologist. And that will be it.

11

Hi Ronald, I’m sure someone will correct me if I’m wrong, but the Vertebral Column scan will also include the spinal cord. Having had one before (and having degenerative disc disease), they will also be looking for other issues with the spine that could be disrupting the nerves and causing your symptoms.

I sympathise with your frustration & pain, and fingers crossed this scan will give you some answers, or at very least rule out some possible causes.

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Thanks for your reply Chris. Means a lot to me in these tough times, since I am alone most of the time. I hope you are right. I thought it were two different kinds of scans. But I will have to see on sunday.

Today marks my 27th birthday. It sure doesn’t feel like it. Probably going to spend it in bed. My only wish for my birthday is getting a diagnosis soon. I don’t care what it might be anymore. If it’s MS, so be it. Then i’ll finally know what i’m up against. May I ask, are you diagnosed with MS yourself? If thats a private thing, I ofcourse understand.

13

Happy Birthday! I know this isn’t how you want to be spending it, I hope you managed to at least find something special today to take your mind of it, if even briefly.

Like you, I have no diagnosis. I’ve had 2 waves of strange things happening to me over the last 6 months which prompted a neurologist visit & a Brain MRI. Thankfully the MRI was clear, so I was sent on my way. I did start to feel mostly better, but then started getting other symptoms, skin crawling, numb patches etc… most recently I started getting persistent muscle twitches, so I am booked to go back and have an EMG. I too would like a Spinal MRI & a LP, just to be sure… but for the moment they are only focused on the visible symptoms, hence the EMG.

I’m no where near as bad as it sounds you are, but I can sympathise with the waiting and not knowing. Fingers crossed that you have some answers one way or another on Sunday.

14

Hi Ronald,

I’m from the Netherlands too, and since 2,5 years, I also experience the exact same problems you have. It started in October of 2017 when I was at the Amsterdam Dance Event. In the middle of the night I suddenly felt extremely dizzy. It was like a shock. I had to sit down for about 2 hours before I could even walk again.

Since then these ‘shocks’ of dizzy spells continued and worsen. I have been through the exact same ‘mill of unwilling, uninterested, unmotivated doctors and specialists’ you have. “It’s all in your head”. Yes it probably is: FYSICALLY.

When it started, I noticed also, I had these twitches in my fingers and legs. Its vers short, but they move like when something scares the S out of you. Now, since a few weeks, I noticed that hands and vingers begin to shake once i intent (and) to move them. In rest it’s kinda ok, as long as I do not contract any musscle. But when I do, they start to shake.

A few days ago I woke up in the middle of the night, and got another great surprise: My arm was also shaking which caused my whole body to shake which woke me up. Great. Then I thought, this is it. I’m done.

I contacted my docter and send him a serious letter. I explained ALL of my symptoms. I also said: Yes I have used the drug 4-FA on the party when I got dizzy the first time. And also, I got bit by 9 ticks, 2 months prior (august 2017). He all knew it all the time, but I repeated this. Now I am send to the Neurologist and because of COVID of course I have to wait 3 months before I have my first appointment.

Meanwhile, my vingers, arm, hands, knees. they all begin to shake when I ‘need’ them.

I’m in the same boat as you are. The only thing is that, yes, I lay, most of the time on my back on the couch, because of the balance problems. But I still have my job. It’s really hard to continue living like this, with absolutely ZERO light in the tunnel. This just goes nowhere.

Well, If you want to contact me, contact through email: [please contact by PM] so we can talk in dutch.

Nique

15

Thanks man. Im trying to stay positive as much as I can, but it sure won’t be a day to remember. My mother is going to visit me later on. Usually I’d throw a party for all my friends or something. Pff, so surreal. How is it possible for someone completely healthy to go half bedridden in 15-16 months.

Im truly sorry to hear that. When are you going to get your EMG? Yeah, I would like to get a spinal tap too, even though its not a pleasant experience. Wishing you all the best man, let me know the outcome. My focus is on sunday now, however the results will probably take a while.

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Hey, I hope your scan went ok?

Thank you for the support, I have to wait on my insurance to sign off on the EMG before it can be scheduled. I’ll let you know how it goes. although with COVID they may not do anything too soon.

17

Hello Chris,

The scan went good. Took about half an hour. Now I have to wait for the results. Hopefully it won’t take long. My legs are still burning and twitching a lot.

I see. Must be frustrating dealing with those kind of things when all you want is to undergo a test. At least, that is my experience. Im hoping you’ll get that EMG soon. Let me know man.

18

One thing I have noticed here is you say your neurologist mentions your clear MRI of the brain. I think maybe you should ask for an MRI of the spine. When I had mine, I had lesions showing only on my spine MRI so it is possible to have nothing significant on the brain MRI but still have lesions elsewhere!

19

Hello everyone. I just wanted to let those who might be interested know that I have the results of my MRI. Some arthrosis between C4-C5 and C5-C6. And another thing which I can’t explain or translate well enough in English (something about th1-th2, degenerative posterior something, makes little contact with myelin/spinal cord). But no lesions or myelopathy. So that makes the chances of me having MS slim I guess. Also my bloodtest for lyme’s turned out negative.

So, that’s it then. Not sure if I should be happy or not. Normally you’d be happy with “normal” results. But after all these months of misery and the fact that I’m still feeling more horrible every day, I don’t know what to feel anymore. I can’t even walk properly due to coordination problems and severe dizziness. Feels like i could collapse any moment when walking. My legs and other parts twitch, burn and hurt all of the time, and mentally in a blur (no emotions, can’t even cry anymore). I don’t know what to do anymore. Does anyone have any tips or suggestions? What happened to me? How can someone get from completely healthy to not be able to walk properly in just over a year. Broken.

20

Hello again.

Oh poor you…so sad and in total disbelief…I felt like that for years, as you know. But since finally getting that diagnosis I feel much better mood wise. I know nothing will improve and I will be heavily dependent on others for the rest of my life.

But getting a diagnosis makes a huge difference to my mental well being.

My wonderful, oh so wonderful neuro works at The Walton Centre Liverpool. Any chance if getting a referral there?

Boudsx