Undiagnosed and rare conditions
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9 months undiagnosed and feel so lost

Hi all, decided to start joining some forums for support as i feel so lost. It's been a long nine months with no end in sight.

I am an otherwise healthy 28 year old, used to be very active and for the past nine months I have been suffering with a myriad of "non specific" symptoms. Prior to this I had never been to a hospital before or having needed to see a medial practitioner as i was always the picture of health. Before i became ill I was heavy lifting helping build a kitchen and had also suffered from severe emotional trauma a couple of weeks before. 
It began while i was out and was kneeling to look at something and upon rising back up i had a sudden onset of dizziness. Assuming this was because i stood up too quickly i dismissed it. Time went on and the dizziness became worse and produced new symptoms:


-strange sensations on my skin such as pins and needles
-shortness of breath
-chest pains
-pressure in my head
-neck stiffness where my neck slouched forward and found it hard to keep it upright.
-mild pain that travelled to my upper back and down my arms
- felt like i was going to faint.


I was taken to hospital where they took an ecg, chest X-Ray and blood tests and was then given the all clear.


My symptoms did not subside so i began visiting my general practitioner who took bloods (calcium, ESR, CRP, Vitamin D, cholesterol, B12, Folate, Thyroid, Lymes serology, Celiacs), an ECG, 24 hour ECG, Heart stress test, Urine samples, took my blood pressure sitting and standing, listened to my heart and lungs, balance test, reflexes, touching my nose to their finger and following their finger, looking in my ears. All of which came back normal with the exception of Vitamin D where i was put on a course of 50,000 units a week for six weeks and 1,000 units daily thereafter. 


A few months on these symptoms got worse and i was experiencing further new symptoms:


- palpitations where it felt like a pause and then a sudden thump (lasting a couple of seconds), this could also be felt in my throat. 
- Digestive problems. Heart burn, sometimes find i have a lot of air and stool is majority of the time softer than normal.
- Facial pain that would come and go.
-Sheer exhaustion mentally and physically. 
-Brain fog where i feel like i cant concentrate, remember things or think clearly. 
-Vision problems, when i exert myself I can on describe it as if you were to look into a kaleidoscope, minus the colours. It feels like things are moving when they are not.
-My body cannot regulate temperature all the time, sometimes i am sweating when it is not warm and at other times im shaking as i feel cold when it isnt that cold. 
-Mild headaches that can be felt sometimes frontal and sometimes on the top, changing sides. 
-I have become very dissociated with myself and have become quite anxious as no one can tell me what is wrong.
- tinnitus/pulsatile tinnitus and ear fullness.
- shaking/tremors in my right leg.


With the general practitioner unable to pin point the cause i was then referred to a neurologist who carried out an MRI of my brain and full spine. He stated that everything was normal except a slightly enlarged pituitary gland in which i was told this could be down to at which stage of the menstrual cycle i was on and a small area of non specific white matter where i was told it was within normal parameters and that he was not concerned. He prescribed me duloxitine which i ultimately had to stop taking as the side effects were too much for me. He offered no further assistance and told me to follow up with my general practitioner.


I attended an eye exam and the hearing clinic where i was told my eyes are good. I decided to then go to an osteopath who explained she could feel evidence of a whiplash injury in my neck. I stopped going as i wasn't getting any better. I then tried an acupuncturist who had the same findings as the osteopath. I discontinued my visits here as there was no improvement. I have been visiting a chiropractor who has the same findings as above with no improvement thus far.

Found a lot of my symptoms are very similar to upper cervical instability but have no idea how to get that diagnosed. All the doctors at my surgery are pretty much under the impression this is all in my head and im just stressed.

 

i just want my oId self and life back. Every day is just a struggle now. If anyone has experienced anything similar or can guide me somewhere for help it would be extremely appreciated. x

Replies

  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Hello @MikaxTomika

    Welcome to the community, thanks for introducing yourself and I'm sorry to read about what you've been through these past 9 months, that on top of the pandemic can't have been easy to handle. 

    You've done the right thing in reaching out for support, it can seem like a lonely world at times and being on a supportive and welcoming community like this can help to ease those feelings of isolation. You are among friends.

    I imagine that you are at a stage now where you just want some answers really? It must be very frustrating to have seen so many health professionals and yet still have nothing to show for it. I wouldn't be surprised if it has impacted your mental well-being too, it certainly appears that way judging by your post and again I'm sorry to read that. 

    Do you have any hobbies or interests that you indulge in to help take your mind off of things? I appreciate that those won't get you a diagnosis or anything but it's important to relax and do things you enjoy. Also, do you receive any support from loved ones?

    If you ever want to chat to anybody alongside using this online community, you are more than welcome to give our helpline a call, you can find their details here.
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • MikaxTomikaMikaxTomika Member Posts: 4 Listener
    Hi @Ross_Scope

    Thank you for your reply. You're right, ive never felt so alone and add frustration on top of that. I guess i just cant get my head around the fact that doctors can't find out what's wrong with me and they've pretty much left me to investigate myself alone. I don't want to be like this forever and im pretty desperate. 

    The NHS was struggling before but now its hit rock bottom with the pandemic. I've spent thousands going private because nhs wait times are super long. I can't imagine what its like for other people who are worse than me :(

    It certainly has effected me mentally, even though i hate to say it. There is a lot of what if days where i just spiral into sheer panic. I'm supposed to be going back to work end of this month as cabin crew, but now im fearing that i will lose my job because of this. It's tearing me apart. I just want someone to say this is what you have and this is how its fixed. But i guess its never that easy haha.

    I was very active before. I did a lot of walking/running, hillwalking, fixing cars, gardening, cycling. But of course all of this has stopped since any sort form of exertion causes the symptoms to become worse. So i am struggling to keep my mid occupied. Tried watching movies or cooking but even then my symptoms take away any enjoyment from it.

    My mum and dad have done their best but i think even they are getting quite frustrated with me not getting answers and obviously have to watch their once happy and active daughter rapidly decline with no reason as to why. My fiance, who's from malaysia and where he currently is now, is really trying to get permission for me to go to Malaysia as their healthcare system is a lot better than it is here. You don't wait months to be seen only the next day or if its urgent there and then, they keep you in until they find the issue, none of this bac and fourth. I guess this makes it more frustrating for me since i know i can get better help elsewhere. But the again pandemic isn't helping haha.

    Thank you so much. I may give the helpline a try see if its any help x
  • woodbinewoodbine Community Co-Production Group Posts: 4,454 Disability Gamechanger
    I think its unfair to say that Malaysia has a better health service than the UK when they operate a two tier system, here its free at point of use for all.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • MikaxTomikaMikaxTomika Member Posts: 4 Listener
    @woodbine In terms of getting to see someone, appointment turn around and results, it is better. There you can walk in and see someone there and then. Here you wait for everything even privately. Just because it's free doesn't mean its good. NHS has been on the decline for years. No money and under too much strain. It will eventually be privatised. 

    Here its waiting for the GP to send a referral, if they give you one, waiting for the hospital to accept that referral, waiting to get through the waiting list, waiting for an appointment to come through, then waiting for results, then if the result comes back okay you need to go through the whole process again. I had my 24 hour ecg taken mid April of this year we are now mid July and still a cardiologist has not been assigned to me nor looked at my ecg. It took a month for the hospital to accept my neurological referral and then a further three months to get an appointment for an MRI. It took two months for an appointment just to get a 24 hour ECG put on. Both i was on the urgent list. I feel bad for everyone needing urgent care. Since then i took out health insurance and go privately at least its a little better.
  • woodbinewoodbine Community Co-Production Group Posts: 4,454 Disability Gamechanger
    Ok i'm not going to get into an argument with anyone about this or that health service v the NHS, however in defence of the NHS I will say this, twice during the pandemic I had cancer scares, on both ocassions I saw my GP on the day, and a consultant within 12 days, in the first instance I was treated 3 weeks later (luckily it wasn't cancer) and on the second i was seen by a consultant within 12 days and was given treatment on the day (again i was lucky it wasn't cancer but it was serious).
    So forgive me if i don't feel that the NHS has let me down or the vast majority of it's patients, in what have been extraordinary times
    @MikaxTomika a warm welcome to scope and our forum.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • vikingqueenvikingqueen Member Posts: 458 Pioneering
        There is a movement control order in place in Malaysia, I can't see you being able to travel there until restrictions are over. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,129 Disability Gamechanger
    Hi @MikaxTomika - just adding my welcome to the community. I have to say I've walked a mile in your shoes with GPs who didn't know why I had certain symptoms & offering medication that didn't work; meeting consultants who had no answers, etc. I did find out through my own research what disorder I likely had, then had a 2 & a half year wait to get this 'confirmed' by the only specialist in the UK who could at that time. Additionally had some neurological problems; again through my own research identified the cause, then had a lack of understanding with our UK Drs. A New York neurosurgeon was however incredibly supportive, & I now find USA neurosurgeons some 10 years ahead of our UK counterparts as far as my disorder goes.
    You mention whiplash; I think you would know if you'd sustained such an injury. You also mention upper cranial instability. X rays should confirm this, but don't always in my personal experience, & from what I've learnt. If there's any rotational element to this, then basic flexion & extension X rays may not help. The only other thing I can comment on, again from a personal perspective, is that I also have difficulty with temperature regulation, which was put down to dysautonomia. This can also cause you to feel faint on standing (orthostatic hypotension). Now the causes of this are myriad, so I'm probably not being too helpful. However I found that tightening my abdominal muscles before standing can help. It doesn't always help my dizzy as a coot moments; often nothing does, but it can help.
    As Ross says, of course you want answers, & I hope you find them. I found that identifying my disorders undoubtedly helped. To have Drs intimate it's all in your head is awful, & I know many with my disorders have been viewed the same prior to diagnosis (unfortunately this seems to often be the case with other disorders too). Stress causes it's own symptoms, but part of the stress is caused by not knowing what you have, & not being believed.
    Thank you for saying, & explaining so much, & I'm glad you've found this community. My best wishes too.
  • MikaxTomikaMikaxTomika Member Posts: 4 Listener
    @vikingqueen Yeah i know sadly. They do allow travel for medical purposes if you gain permission through compassionate grounds but due to covid everything is very uncertain and is holding a lot of things back. I'll do the best that i can here just becoming very tiring.
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