SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
HELP Anyone out there.
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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HELP Anyone out there.

I have had 2 MRI's and my last one was to exclude demyelination,
I have also been having they think mini strokes,
I have been off work for 18months now as I cannot function with day to day life as I used to, all this just came on when driving one day. but my GP said a lot of the symptoms have been since I had an incident at work involving a gun shooting incident with myself and colleague. I have PTSD from this.
We have paid to see another Neurologist and have shown him my MRI results and info from GP, he said it was nothing in my mind but could be FND?? My GP is flabbergasted by both Neurologist answers and thinks they have pre-diagnosed me on this.  
1 Neurologist has given me Pregabalin to take, if its nothing then why this medication.
We are in desperation, as I just want my life back.  
Below is the impression from my MRI.
Multiple subcentimetre bright signal foci in the cerebral white matter* on T2 and flair sequences. These foci are of non-specific clinical* significance and might represent chronic focal ischaemic insults but* possibility of demyelination cannot be entirely excluded.* A correlation with clinical presentation is suggested.
2 Comments
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You seem to be the one to ask on here.
I have written my post again so hopefully more understandable.
Can you assist me in this situation it is a bit long.

Has anyone got any ideas what’s happening PLEASE
Strokes or MS

I was having lots of colds and viral infections/bladder infections that I thought where causing my headaches neck/shoulder pain
all on my left side. Felt like I was ill all the time and not me anymore, who was always happy loved life and ready to party and spontaneous.

I then had what I can only describe as a funny turn of not knowing what was happening. Feeling foggy and out of sorts lost/ confused and distant, blurred vision and sometimes double vision. When I came out of this sensation I had a numbness/tingling down my left side of my face/my left arm would not work correctly I could not hold a pen to write and my leg felt heavy, it felt like my body just would not function properly? These feelings happened even when I was just sitting watching TV or reading etc.


My GP did blood work but no stroke but noticed my carotid on my left side not right went to see hospital had ultrasound a slight blockage found and given Amlopodline ?  was sent for x rays on my neck/shoulder thinking it could be trapped nerves. all ruled out arthritis/old age (53 at that time)
I was signed off work as my blood pressure was up and down even on my candistartan etc. (due to family history I was on this a precaution) and that I just could not function.

I was sleeping (if that’s what you could all it) loads but feeling fatigued all the time, could not think straight everything was hard work. As I was crying a lot felt angry and confused not knowing how to do things that should actually not require any thinking?
I was always doing something and things had to be organised nothing was ever to much trouble, then to find I cannot remember simple tasks has got so frustrating.

My legs felt like they would not rest/heavy, my ankles where stiff
/ swollen, I'd have wait until I felt steady and shuffle along until I felt steady to walk as I was constantly tumbling to the left? I still can only walk a short time until I feel totally exhausted and have to rest. My whole body also felt as stiff as an ironing board? all over at times, bladder and bowels started and still working differently, and sex drive plummeted.  These symptoms could last for a few days/weeks then I'd feel a bit better but never got back to my old self.
So by now I’m on blood pressure meds/ Atorvastatin / Amlodipine / Naproxen / Sertraline.

My left side still having the tingling and lack of feeling in it, which
Varied from day to day depending on how I was feeling, but knowing I was not myself but not knowing why?
My GP sent me for CT scan all clear, x ray on my neck all clear.

Referred to Neurologist
1st MRI was unclear as I was too nervous and it was unclear to read neurologist said, so sent me for an open MRI.
He did not do anything examination apart from asking about my PTSD and then said possibly  Fibromyalgia or Somatization disorder take this Pregabalin?

My 2 MRI was to exclude demyelination and mini strokes.

Below is the impression from my MRI.
Multiple subcentimetre bright signal foci in the cerebral white matter* on T2 and flair sequences. These foci are of non-specific clinical* significance and might represent chronic focal ischaemic insults but* possibility of demyelination cannot be entirely excluded.* A correlation with clinical presentation is suggested.


I have been off work for 18months now as I cannot function with day to day life as I used to. My GP said a lot of the symptoms have been since I had an incident at work involving a gun shooting incident with myself and colleague. I have PTSD from this. And have been on medication for this from time to time.

GP is flabbergasted by the Neurologist answers and thinks they have pre-diagnosed me because of this, but he knows me better than them. I am not a Hypochondriac he said. (thank goodness as I was really doubting myself at times)  

We have paid to see another Neurologist and have shown him my MRI results and info from GP, he said it was nothing in my mind but could be FND?? My GP is flabbergasted again by the Neurologist answers and thinks they have pre-diagnosed me on this.
Nether have addressed the possible mini strokes even or given him help in treating me.

The Neurologist that’s prescribed Pregabalin has not even said if I should still continue. if its nothing then why this medication.

We are in desperation, as we just want my life back.  





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I'm sorry you are having such a difficult time getting answers.  Have you posted your question in the Neurology and MS forums?  Quix is no longer active in the forum, but both groups are very active, while this group has become very quiet lately.  

I'm sorry for all you're going through and that I don't have any answers.  Wishing you well.

Laura
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