[weekendsrule]

Just wanted to say hi

I have had chronic pain for years now, and other 'weird' symptoms for the last year or so. Most GP's never believed me (I also have PTSD, so am oh so "obviously" stressed and/or attention seeking ), and even the one I have now, who has always separated the physical from the mental stuff, is now either asking me what I think or putting it down to stress (my psych wants a MRI of my head as she doesn't think it's stress at all, but my GP won't go for that???).

I don't know what to do any more. Now that DH is losing his job, can't afford to see a neuro anyway...

We should have a 'limbo' group lol....

[justthetwoofus]

Hi Anni,

I'm going through something very similar and I really do feel for you.

I have had all but one of your symtoms and a list of other wierd symptoms too, including internal and external tremors. Mine happen in episodes that last weeks/months and then disappear. I'm really well at the mo and have been for six or eight weeks now (I love that I have lost count......When I am well I feel comaratively amazing ). But when I'm not I literally spend most of my time in bed....for weeks on end. Thankfully I have a wonderful bunch of really close friends who rally around to look after me and my son when things go bad.

I have had many many tests including MRI's which have revealed only 3 small tumors on my spinal cord, so far no lesions. I have also had a lot of genetc testing done which I will get the results for on Thursday at my next Neuro app. I still dont have a diagnosis and its true, the waiting and not knowing is really hard. Even when I'm well I still have this awful feeling of looking over my shoulder, wondering when it will come back again and knock me off my feet. I try really hard not to think aboutit and just enjoy being well.

Its a shame your app is so far away. Have you made a timeline of symptoms to give to your Neuro? I made a really detailed list (pages of detailed episodes etc) and my Neuro said it helped a lot.

Do you have a good support network? Someone who you can talk to? Even though my friends are so suppotive and they really do listen, I know that they cant really understand what it feels like......"limbo land". It does really help to vocalise though.

I wish I could tell you how to make the time go faster!

All I can suggest is to try and stay away from google and to somehow mentally be ok with the wait. I am working on that one!



I really do feel for you!

[jorgo]

I asked about a virus, because Myalgic Encephalomyelitis (M.E.) is a neurological disease caused by a virus (causing central nervous system damage) and has very similar symptoms (not the pimples though). Most doctors are not aware that it is neurological though due to the other name it is often called - Chronic Fatigue Syndrome. But it is classed as a neurological disease by WHO. In order to qualify for a diagnosis of M.E. you need to have muscle exhaustion and weakness after any exertion. It also causes cardiac dysfunction, low blood pressure or low blood pressure upon standing, on going flu like symptoms, numbness and tingling, burning sensations, severe cognitive dysfunction, headaches of a new type and severity, blurred vision, hair loss or thinning etc. It can even cause seizures and paralysis.

The symptoms are very similar to both MS and Lupus

http://www.ahmf.org/infosheet.htm#5

Good luck!

yep this is me
combined with
thyroid issues
pcos
hyperplastic everythings ( basically things super grow and if left to themselves eventually turn some form of cancerous or "pre cancerous" )
psoriasis
and "epileptic focused" migraines ( which for me as a mild case means if i vaguely feel a headache coming anyone near me has to watch out for randomly flying pens forks and knives.... stabbed a friend with a pen in high school once lol... they learnt quickly on days I couldnt think of basic words [ table , chair, shirt] dont sit within arm reach lol)
but i also get an associated "crawling ants " feeling over my face and scalp with this

so i'd second thinking of this as a direction.... mind you good bloody luck finding someone who agree it exists


OT
weekends. rule...... cant your psych order an mri on a diagnosis VS medical basis ?

[wca]

Thankyou SO much for the replies everyone!
I saw my GP last week for an update on how I was feeling. She is going to re-check my Iron levels and do a full blood count and depending on how they are she will do a CT scan (which can be done there apparently) just to check for any obvious abnormalities while I wait to see the neuro in August.
I feel like a drama queen, and worry that the GP thinks I'm being a bit over dramatic about it but I would hate to take the "oh well do nothing and hope t goes away" attitude and then find out too late that it is something very bad. Better to be safe than sorry, plus this has been going on for almost a year now.

WEEKENDSRULE> A Limbo Land group, love it!

Anni xx

[Guest_Seraphena_*]

yep this is me
combined with
thyroid issues
pcos
hyperplastic everythings ( basically things super grow and if left to themselves eventually turn some form of cancerous or "pre cancerous" )
psoriasis
and "epileptic focused" migraines ( which for me as a mild case means if i vaguely feel a headache coming anyone near me has to watch out for randomly flying pens forks and knives.... stabbed a friend with a pen in high school once lol... they learnt quickly on days I couldnt think of basic words [ table , chair, shirt] dont sit within arm reach lol)
but i also get an associated "crawling ants " feeling over my face and scalp with this

so i'd second thinking of this as a direction.... mind you good bloody luck finding someone who agree it exists

Only a stupid doctor would say it doesn't exist, they are also in breach of the world health organisations disease classification if they do not acknowledge and abide by it and can get themselves into A LOT of trouble. Unfortunately as you obviously know there are a lot of those doctors around!. M.E. can best be described as an ongoing enteroviral infection of the brain and spinal cord, hence it's name Myalgic Encephalomyelitis (inflammation of the brain and spinal cord) and is a cousin to Polio, outbreaks of M.E. followed Polio outbreaks. It isn't caused by any other virus, history dating back to 1934 clearly shows this. It's also medically explained with over 5,000 peer reviewed scientific papers clearly showing biomedical abnormalities. M.E. can be easily diagnosed by an expert M.E. specialist through an MRI or SPECT scan (it shows lesions on the brain). LOTS of people are told they have this disease when they actually don't!, a recent study in the UK found that 40% of people diagnosed with it actually didn't have M.E.. Experts have also found that women with M.E. go into menopause 5 years earlier than healthy women, children with mothers that have M.E. are commonly born with learning disabilities, health problems and the enterovirus can be passed through to the baby, causing the baby to get M.E. as well. It's not a good idea at all for women with M.E. to have children, if only I knew that before having my child (who now has learning difficulties). The death rate for M.E. currently sits at 10% and is due to organ failure and or overwhelming infection.



This post has been edited by Seraphena: 17/05/2011, 08:40 PM

[kp444]

Did you get a diagnosis? I have had some of these weird symptoms and am 7 months post partum. I've had an MRI which was clear and bloods are all normal. I have tingling sensations in my legs, seem to get pins and needles easily. Sometimes just feel foggy and like you feel my only anxiety is due o my symptoms. Wondering if it's all just hormonal