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May 21, 2012, 07:41:42 PM
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20 years so far...  (Read 967 times)

Newbie
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Posts: 2


Well I'll try to keep this short as it's a VERY long story.

When I was born there were some complications, such as having the umbilical cord wrapped around my neck, arm, leg, neck again (lol) so tight that it asphyxiated me and my heart stopped beating. They revived me using defribullators (can't spell) but I was a very poorly baby and had to be in an incubator and so on. I was not premature and I was a rather chubby baby so I was obviously fairly healthy up until this point. A few days later they released me and my parents took me home, but that night I didn't wake up to feed and when my mum got worried she tried to wake me up but it wouldn't work. I stayed in a coma for ten days after this, which the doctors attributed to my brain shutting down to try to recover from the trauma during my birth.

Over the following few years I developed very slowly. I was several months behind other children in learning to talk, walk etc. My parents had to wake me up to feed me because I would sleep A LOT (and still do!! lol) and they would have to feed me like a baby bird, rubbing my neck to make me swallow. I had physiotherapy basically from when I was a baby right up until I was 18. My feet turned inwards so I often tripped over, altho thankfully now they don't. Generally my muscle tone has always been poor and I am constantly getting colds, sickness bugs and so on, although I do not have a poor immune system.

When I was about 5 I noticed that I couldn't get the fingers of my left hand together, like in a 'stop' kind of sign. My little finger and ring finger didn't seem to be in my control, although I could bend them and so on as normal. This lead to me noticing my fingers would move of my own accord. By the age of 10 my entire body had a muscle tremor, which obviously made me very very self-conscious. Although it is difficult to see my tremor oridinarily, unless you are looking for it, i was constantly aware of it until fairly recently. Obviously this made it awkward for me as a teenager in terms of dating but also things like giving presentations at school. My tremor gets worse when i am stressed, nervous, excited or particularly tired so obviously the most stressful things are made more stressful by my tremor. It also effects the muscles round my mouth so it makes it difficult to get my mouth round my words sometimes.

When i was about 11 I had a full blown seizure. I was tested for diabetes, given brain scans to look for epilepsy but all my tests came back normal. I continued to have small seizures where i would become dizzy, feel sick and like my blood was literally boiling in my body. I would have what i called 'weird feelings' in my head which i can only describe as someone having their hands in my head and squeezing my brain, and then other times it would feel like the fluid around my brain was moving around. This obviously freaked me out and I would often have panic attacks and hyperventilate. This was really really traumatic for me.

I have always been extremely tired. The way i describe it to people is that the way they feel after a really long, busy day at work is how I feel when i wake up. So you can imagine how I feel when I've been to work or university. Having my period was awful as a teenager, i would be incapable of getting out of bed for 3 or 4 days. I prayed it would come on during the weekend so i wouldn't miss school, but usually i would only make it in for 4 days a week anyway due to tiredness. At 16 i was put on the pill and since then it has settled down, although i am still more tired at this time of the month.

I have had countless blood tests, to look for brain damage of the basal ganglius (which is what i have been diagnosed with several times, but apparently i do not have the anti-bodies which would be present if i had it), and to look at my DNA for a genetic disease which apparently only affects people with jewish blood - im not jewish so it isnt surprising i didn't have it. lol. I have had several brain scans to look for different things, including brain tumors, but they have apparently come back totally normal. I have had ECG scans (where they put the little wires on your head and then look at your brain waves) but these have apparently been normal too. I even had an EMG which is possibly the most horrible test ever. It involves giving a person electrical shocks in their muscles and along the nerves to check for nerve damage/problems. Basically, if it hurts like you're going to die, your nerves are fine! This, too, came back normal. I'm sure I've been tested for other things but don't remember them all. One doctor thought I had mad cow disease but I definately don't. I have been told I have cerebral palsy but this was by a GP, not by the neurology specialists i have seen so i think she actually meant i have many of the symptoms of cerebral palsy, which is what is written in my medical notes. I have been told that I have the symptoms of parkinsons but im not old enough to have it, they also put me on a drug called L'dopa which is for parkinsons but this didn't make me better, it made me critically ill so i had to come off it after a week.

So yeah, that's really the very basic stuff but you get the idea. Does anyone have any clue as to what i might have???


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Group: Administrator
VIP Member
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Gender: Female
Posts: 920

I Will Be Diagnosed !


 welcome to the forum

Wow 20 years I just cannot imagine. If I think of anything that may help I'll be sure to post.

 Huge Hug
Sammy


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Sr. Member
****

Gender: Female
Posts: 263


I know how it feels to be so sick for so long.. I have been undiagnosed now for about 15 years or close to. Though I have always been a sick child and baby so maybe my whole life... who knows!
Glad you found this forum. Everyone here is very helpful. I see alot of your test have been nuerological or to do with nerves and such. Have you done any cardio tests?? or  seen an endocrinologist?? Is your full list of symptoms then mainly the tremors and spasms, fatigue, painful menstrual periods... though I see that you have some muscle weakness problems.. and trouble swallowing.. another question do you have a droopy eye on one side or both that you ever notice????? I don't know really what I could tell you what I think you may have but I do know that I have done A TON of research for my own health and come across alot of things that don't perticularly pertain to me .. but I remember them so if I hear someone states a common symptom for something I have read or found.. I definately share.

Glad you found this forum.. welcome! Take care of you the best you can


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Formerly Undiagnosed
Sr. Member
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Gender: Female
Posts: 455

Told You It Was Not All In My Head!


Hi, I am new too. Wanted to say hello. I am sorry you have been undiagnosed for so long.  welcome


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~Keilia~
   

Newbie
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Posts: 2


Hi Guys, thank you for being so nice!!

I don't have any droopy eyes, I look totally healthy. lol I've had quite a few people tell me I've made it all up because of that. When I was a baby I saw loads of different specialists who all basically turfed be back to neurology & I continued to see a consultant neurologist until last year, including frequent visits to the best peadatric neurologist in the UK, who basically told me i am what doctors are there for because i am a total mystery to them. which is nice but doesnt really help me!! my main symptoms are fatigue, tremors, general muscle weakness (altho through physiotherapy I have gained a fairly normal level of strength etc) and occasional seizures, although those are much more rare these days. I no longer have trouble swallowing, that was only before i was on solids as a baby.


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Group: Administrator
VIP Member
**********

Gender: Female
Posts: 920

I Will Be Diagnosed !


You mention the last visit to a neurologist was a year ago, are you thinking of perhaps seeing another Doctor for some more opinions? I know how frustrating it can be, just wondering what steps you're taking at present.

Hope your ok
 Huge Hug
Sammy


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