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Weird symtoms, Limbo Land?
sick of worrying


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#1 wca

Posted 04 May 2011 - 03:55 PM

Hi everyone,

Since my son was born (he's now 10 months) I have had lots of weird things going on with my body and am in the process of trying to find out what it is. I have been back and forth to the GP who thought I had anxiety (I get anxiety because all I do is worry about these symptoms), had blood test to check my thyroid and Iron and prolactin hormone, all normal except my Iron was a bit low. I have an appointment in August to see a Neuro and get an MRI as my GP wants to rule out MS or something like a brain tumor unsure.gif I get numbness/tingling/burning sensations in my body at random, an odd feeling in my face and forhead, headaches, mental foggy-ness, dizzyness, hair loss (alot, thought it was post baby hair loss but there is no sign of it slowing down and it is REALLY noticable), vague pain and now recently I am getting pimple type sores on my scalp and a few on my arms and legs, and a bunch of other abnormal things. I just have no idea what it could be and ALL I do all day is stress about what it could be. I hate that I have to wait until August to see the specialist.
I guess what I want to know is how do you keep yourself calm during the waiting? Obviously something is going on with me and Im tired of wondering what it is and terrifed it is something sinister. Is anyone else going through the early "trying to find out what the hell is wrong" phase? I have an appointment with my GP on Monday.

Anni xx

#2 Freckles

Posted 06 May 2011 - 01:06 PM

Hi Anni,

Let me start by saying that I have MS and so have been through the awful, not knowing stress. It is horrendous and is worse in a lot of ways than actually having a diagnosis! I am moving your thread to the Disabilities and Chronic Illnesses section where you may well get more support. It might be wort elaborating on your original post to give people an idea what the issues are.

HTH and that you get an answer!


#3 wca

Posted 06 May 2011 - 01:21 PM

Freckles, thankyou so much for moving my post, I really appreciate it. I am starting to feel like even if it is something very serious, I will be relieved to finally know what is causing these things and get on with dealing with it rather than floating around in limbo. Thanks again smile1.gif

Anni xx

#4 tintin78

Posted 07 May 2011 - 09:35 PM

I have a condition called Vestibular Migraines also known as Migraine Associated Vertigo (MAV)
Some of your symptoms sound very similar to what I have/do experience. Mine started 3 months after my DS was born too.

I went through a period of not knowing either, my GP beleived I was a 'stressed' mother and even prescribed ADs at one stage  huh.gif It was by luck after I asked to see and ENT (as i had a fullness feeling in my ears) that he refferred me onto a neuro who was a bit of a guru with 'odd' symptoms! I had Balance tests/Hearing tests done and they all came back normal. The waiting is awful, but knowing I was being proactive and heading in the right direction did help.

There is a place you can get more info if you want to have a look. It's quite an odd condition that not many people are aware of (doctors included) You can find out some more info here


Good Luck hun.

#5 Guest_Seraphena_*

Posted 07 May 2011 - 10:12 PM

Just lurking and saw your thread original.gif

Have you been checked out for lupus? Did all these symptoms just start out after having your baby or did you also get a virus?.

For your hair loss you can take beta sitosterol. It's really good for helping your hair grow back.



Try not to stress!.

#6 wca

Posted 08 May 2011 - 09:44 AM

Seraphena, I havn't been checked for Lupus yet, but now you mention it, nearly a year ago I was struck by a horrible virus while on holiday and have never been the same since. The virus was awful, fever/sweats/shakes/nausea/aches and is the only time I have been sick enough to literally stay in bed all day for a few days.

Anni xx

#7 wca

Posted 08 May 2011 - 10:22 AM

TinTin, thankyou for your reply original.gif  My GP also put all my symtpms down to stress and anxiety, and even diagnosed me with PND and put me on AD's. I don't feel depressed, and I do get a bit stressed (with 3 kids who wouldn't LOL) and the anxiety is all because I worry about the symtoms.
Thankyou for the link, I will check it out.

Anni xx

#8 Guest_Seraphena_*

Posted 08 May 2011 - 01:43 PM

QUOTE (wca @ 08/05/2011, 09:44 AM) <{POST_SNAPBACK}>
Seraphena, I havn't been checked for Lupus yet, but now you mention it, nearly a year ago I was struck by a horrible virus while on holiday and have never been the same since. The virus was awful, fever/sweats/shakes/nausea/aches and is the only time I have been sick enough to literally stay in bed all day for a few days.

Anni xx



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!

#9 unicorn

Posted 08 May 2011 - 01:55 PM

I hope you get some answers soon WCA, it is a worry not knowing what is going on.

#10 minyaca

Posted 08 May 2011 - 03:55 PM

I hope you get a definitive diagnosis soon, because it is incredibly stressful not knowing.

I had the same symptoms as you, minus the hair loss and pimples, and it turned out to be peripheral neuropathy. My GP thought it was MS and I had to wait a couple of months to see a neurologist. Now that I know the diagnosis, I just live with it, and thankfully the symptoms have lessened a bit over the years.

#11 weekendsrule

Posted 15 May 2011 - 11:35 PM

Just wanted to say hi original.gif

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 rolleyes.gif ), 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 shrug.gif 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....

#12 justthetwoofus

Posted 16 May 2011 - 12:33 AM

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 biggrin.gif ). 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!

bbighug.gif

I really do feel for you!

#13 jorgo

Posted 16 May 2011 - 12:55 AM

QUOTE (Seraphena @ 08/05/2011, 01:43 PM) <{POST_SNAPBACK}>
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 ?


#14 wca

Posted 16 May 2011 - 12:32 PM

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! happy.gif

Anni xx

#15 Guest_Seraphena_*

Posted 17 May 2011 - 08:05 PM

QUOTE (jorgo @ 16/05/2011, 12:55 AM) <{POST_SNAPBACK}>
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.


Edited by Seraphena, 17 May 2011 - 08:40 PM.


#16 kp444

Posted 02 May 2012 - 11:12 PM

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





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