Scared, worried, frantic, desperate to talk to someone! xxx

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Scared, worried, frantic, desperate to talk to someone! xxx

Postby kizzydane » Thu Dec 08, 2011 11:23 am

Hi all

First of all I'd like to say hello!! Secondly I'd like to say I'm so sorry but this is a long winded one!!
Yesterday I decided to write down all the symptoms I have been experiencing for several years! and most have been getting much worse recently! Iam so at the end of my tether! I just want to find out what is wrong. I've been putting it down to spinal injuries I received 15 years ago but the Orthopaedic spine surgeon says it's NOT coming from my spine!! He is referring me to a Neurologist urgently as I have some problems with my reflexes!
I've been ill for so long on & off but MS never entered my head until now!!
That's why I'm scared!!

The following is the list!!! It's shocked me how long it is!! Anyone been through this? similar symptoms etc etc ? The worst ones for me arethe pain - particularly around the chest & the overwhelming tiredness no amount of sleep alleviates!

I'm dreading going to the neurologist in case he just dismisses me! 8(

Slight blurred vision constant– much worse when tired,
Double vision most noticeable with text on TV – butone on top of the other instead of side by side!! – squinting helps
Severe Double vision episodes – last a few hours again one on top of the other –not side by side
Constant Flashing light to the left side – sometimes to the lower of both eyes
Sometimes aching pain on movement my eyes side to side
Constant Embarrassing twitch in left eye lasts for weeks – people comment on it as it sometimes spasms right down!!
Lights make me feel very sick & dizzy eg can’t stay in a dance for long, sunlight flickering in trees when driving
Odd happenings – had to pull into a layby because my eyes ‘went’ couldn’t see at all and felt like the muscles were pulling inward and upwards – lasted an hour - hubby had to come & get me
Left work – struggling with the hill because my legs were bad – went suddenly blind both eyes - like white snow and numbness and tingling down my side – ambulance called – lay in A&E for several hours until it subsided
History – I had an accident with a toggle hitting my eyeball & had months of treatment as high pressure behind the eye & swelling/inflammation to optic nerve
Central vision is not there when I look at things in the distance eg looking at a star I have to look to the side of it as I can’t see it when it’s straight on
Acephalic Migraines]– eyesight suddenly goes – starts with a large blind spot – then a shimmering spot seems slightly to the right then quickly fills and goes into a large arc with jagged prism like shapes – last 30 minutes – numbness down right face mouth and side – no real headache – sickly feeling – washed out for days

Recently having several bouts of dull headache – not severe at all but constant & is accompanied by nausea/sickly – disorientated – sweating & chills
Sometimes headache will start then build up throughout the day – painkillers don’t help
Very stiff for weeks at a time – most noticeable when try to look behind when reversing the car
Difficulty swallowing especially pills – regular choking sensation
Pills stick in throat & dissolve there
Severe gagging when cleaning teeth!!
C5 damage 15 years ago

Electric shock feeling shoots down my body when I look down - not all he time
Pins & Needles in feet & fingers

Electric shock feeling/pain shooting up & down my body if something/someone taps or knocks my foot!

Driving – my legs and feet go numb
Pins and needles – hard to push on the peddle

Always feeling exhausted
Need to go to bed most days
Work is difficult
Legs, arms and hands ache and feel weak
Muscle weakness – legs and back get very stiff - no strength – going upstairs a struggle
Feels like when you have the flu

When bad can’t think straight
Stress or upset totally floors me so Ihave to go to bed
If I do too much one day I spend days recovering/suffering

Can’t concentrate/read
Mind goes blank – talking to friends - especially under stress
Can’t get words out – talking with a mouthful of cotton wool
silly things like can’t tell left from right –typing has become difficult
names/dates/numbers – huge problems recently
Forgetting what I was going to say mid sentence!
Totally detached felling – I have to go home
‘all in my head’ feeling
Typing has gone really bad!
Very Clumsy & heavy handed
Slight dizziness now & then

Hot sweats constantly! I can;'t feel the cold at all!
Can't stand the Heating on in the house or the car or a hot day
Feel like my temp control doesn’t work – can’t feel the cold – not even in minus temps

Bowel – when my back & legs are stiff I sometimes get the feeling that nothing is moving or it’s all slowed down – like my bowel is asleep
Now & again – I have a single isolated bout of sporadic watery diarrhoea – no pain – no warning - I rarely make it to the loo – often followed by a normal stool

Lack of control episodes - Not feeling bladder full then suddenly feeling it – then can’t make it to the loo
My bladder empties when I get the electric shock pain around my abdomen

No physical sexual feelings – numb feeling

Freezing cold yet horrible burning feeling in the big muscles of my thighs – both sides but much worse more often on the left

Pain – episodes of Chest pain wrapped right around my lower chest (bra line) – severe spasms – last a few minutes – then spasm again – much worse at night – often wakes me up - can last a few days to a few weeks.

First time it happened it was so severe I ended up in A&E as I thought it was a heart attack

Pain in stomach – again spasming as above – as though the pain has moved a few centimetres down
Spasms round the stomach can feel almost colicky in the stomach itself – like it’s triggering the stomach to spasm
Pain in hip/groin – stiffness – hurts for several minutes to a few hours – can’t walk – both hips

Legs stiff – heavy feeling

Twitching in muscles – lasts between 10 – 30 mins
Often in my calf or front of calf – notice it worse at night
Think I’ve lifted my leg up – fall upstairs regularly and trip on rubber floors

Shaking – legs hands head – whole body sometimes - much worse in stressful situations – even mildly stressful situations!!

Overwhelming shaking – can’t speak – head shakes – hands shake – legs – whole body
No shaking when at rest – only when I go to do something – not all the time

Itching/prickling especially on legs and at night – feels like fleas biting me!

I become intolerant to everything!
Anti Depressants – I get an urticaria rash after a few weeks
Codeine etc – instant headache & violent vomiting
Even ibuprofen and Diazepam!
I ended up in hospital on a drip through taking Prozac

Tests I’ve had:
Blood tests – many tests over last 2 years constantly showing high WBC(the inflammation ones) – sometimes very high – sometime moderately high – never normal - nothing else shown up - under haematology consultant - being sent to a gland/endocrine doctor
Rheumatoid Arthritis - Clear
Anaemia – Clear
Thyroid – normal
Endoscopy – normal
Ultrasound – normal – gall bladder polyp – not thought to be enough to cause symptoms
Blood Pressure – sometimes normal – more often though it’s very low

Family History
Mother – Glaucoma – I have yearly/2 yearly tests – pressure high sometimes
Father – Addison’s Disease – died from stroke/large pituitary tumour (No tests for this apart from 1 GP blood test 7 years ago – normal)

Medical History Stuff
Breast surgery twice after lump– Major Ductectomy – 3 years ago
Cyst removed from Sinus twice – 10 years ago and 2011
Laparoscopy for irregular & heavy periods/pain – diagnosed severe adhesions – Mirena Coil for last 6 years – removed July 2011 – only 1 period since

Car accident 1994? - Discs in L4/L5 prolapsed, T7/8(?) prolapsed, Subluxation to C5 – no surgery needed, suffered with chronic back pain ever since – mostly muscular – managed with painkillers
Enlarged Lymph Gland removed from neck – clear – 11 years ago
Cervical Abnormalities – colposcopy & laser treatment – 15 years ago

A & E visits
Severe Palpitations – tests fine
Chest Pains – ECG fine - from Thoracic discs?
Eye injury with toggle – caused blindness – 12 months regular visits as pressure up and optic nerve inflamed

MRI Scan
I recently had an MRI scan. This was followed by a phonecall asking me to return as I had moved and the lower back images were no good. She also told me that the doctor wanted me to have a dye so he could look better at my thoracic spine.
When I went for the MRI it was in a portacabin because they were getting a new one installed. This nurse told me that the reason I was having another one was because the machine was broken the last time – nothing to do with me moving. When I mentioned I was expecting the dye she said there was nothing in the notes about that. I was told later by a friend who works there that the doctor who initially wanted the dye had left and that the machine in the portacabin was not working properly at all. She suggested I ask nicely for a repeat one.
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby DougL » Thu Dec 08, 2011 11:28 am

welcome to TIMS, there are lots of good people here
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby kizzydane » Thu Dec 08, 2011 11:35 am

Hello Dougl!
Thank you! Thank you 8)x
I suppose I just need to connect with someone!! I know I'm not even diagnosed yet but I'm so feeling a terrible dread!
x
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby DougL » Thu Dec 08, 2011 12:26 pm

kizzydane wrote:I suppose I just need to connect with someone!! I know I'm not even diagnosed yet but I'm so feeling a terrible dread!
x


you found the right place to connect. lots of people here can relate to what you are going thru.
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby lyndacarol » Thu Dec 08, 2011 8:13 pm

Welcome to our community,kizzydane.

You are very wise to record your symptoms and experiences; human beings tend to forget details over time. You/your doctors seem to be quite thorough in testing –"normal" or "clear" is not adequate; I would suggest you keep a file of your test results with the actual numbers. In your blood tests, I assume your doctors have tested cortisol (in view of your father's history of Addison's); I also always encourage a test for the fasting insulin level (this is one of the least expensive blood tests and has only been available since about 1950)

I also had a history of irregular/heavy periods and pain; eventually, I was diagnosed with endometriosis, now considered another "autoimmune" disease. It is quite common for someone diagnosed with one autoimmune disease to be diagnosed with a second or even a third later on.

This is a very supportive group; we will try to answer your questions and share our experiences if asked. Welcome.
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby kizzydane » Fri Dec 09, 2011 12:53 am

Thank you so much!
I had a blood test through my GP several years ago to test for Addisons because some of the symptoms I have been experiencing are common to that - it must have been normal as I heard nothing further! I have been under a haemotology consultant for the last 18 months and I have had regular monthly blood tests.
This referral was following a nasty episode of pain radiating around my upper abdomen/lower chest that just continued to constantly spasm for more than 10 days and nights - this added to the constant night & day sweats was so distressing!

My WBC has been consistently high with every test which was worrying as my sister had non hodgkins lymphoma. She said she would get to the bottom of it but once she had ruled out several things like rheumatoid arthritis etc she just said she had come to the end of the road and was referring me to an endocrine doctor or a general medical - this was several months ago but I haven't heard anything since! I haven't had any any test where I have had to fast before it so I'll put it on my list!

I'm in a horrible place at the moment - I feel so ill & exhausted all the time and there is always something wrong - odd pains, hurting, aching, stiffness, weird sensations and the fact that it has gone on & on & on is jus so daunting!! I have made lifestyle changes, cut out caffeine to see if that helps the constant shaky feeling in my stomach - no change! I try to exercise but simply fail miserably because I feel so weak & stiff!!

I saw a spinal doctor a few weeks ago and I have problems with L4/L5 vertebrae after an accident 15 years ago and have a couple of discs T7/T8 that are bulging - I was so convinced it was this but he insists they wouldn't be causing my problems ie the pain, the sudden electric shock sensations round my torso, burning thighs, aching legs, flashing lights in my eyes & trouble with my bladder! He said he thinks they are neurological and has referred me to a neurologist!! When I pushed he said he suspected it could be MS or something similar and wanted to rule that out. Wouldn't any lesions have shown up on the MRI? - Nobody has mentioned anything other than the discs! and to be honest I'm not convinced the scanner was working properly! Also do you get the consistently high WBC with MS?

Sorry - there are so many questions I want to ask someone -it's so frustrating!!! x
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby Kiyaan » Fri Dec 09, 2011 1:23 am

Hi and welcome to the board.

As is obvious from my post count, I am too a new member to this board; though I have read through most of the threads in order to see what other people do for MS. My reason for eventually registering was your post.

You may have already read through a lot of literature available which means you know that a lot of your symptoms are consistent with MS but they can all be explained by other relatively less serious issues. Issues ranging from B12 deficiency to lupus can explain some of your symptoms, but the real differential diagnosis of MS should be left to a qualified neurologist who is hopefully an MS specialist. Your neuro will likely start with an MRI of your spine and your brain.

My real point is though, you have lived with whatever this is for years; you have proven that it is certainly doable and hopefully with proper treatment and diagnosis you will do better.

I realize that it is certainly easier said than done, I have been there. But do your best to calm your mind.. do whatever takes your mind to a better place. As funny as it sounds, I found doing the dishes extremely therapeutic and I'm a 26 year old man! You will probably find that most people here will be able to sympathize with your situation and will offer whatever support they can. They will probably also be able to tell you that being diagnosed wasn't the end of the world and in many cases offered relief, given the annoyance and fear associated with not knowing.

Good luck.
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby kizzydane » Fri Dec 09, 2011 1:40 am

Thank you Kiyaan!
I just hope the neurologist does all the right tests - I'm getting so frustrated with thinking it's this, then that - then being passed from pillar to post! I just feel they are missing something all the time!
I have such a muddle of persistent symptoms - they seem to be taking them all individually & they don't seem to be finding anything - I'd like them to look at them all together! Hopefully the neurologist will do this! I think I will contact my GP & chase up the endocrinologist appointment as lke you say things like lupus, addisons etc all present in this way too.
I can understand the relief bit that people feel no matter what the diagnoses - at least you know what you are fighting and can turn to others for advice and support and try things out. As for doing the dishes - get a grip!! lol :)
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby Algis » Fri Dec 09, 2011 3:41 am

We all here to help as we can; hang in there; don't be scared (it's useless)... Many will probably pop-up for advise; meanwhile I suggest you read throughout the posts and try to figure out if anything 'fit'.

Courage :) Be well.

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Re: Scared, worried, frantic, desperate to talk to someone!

Postby kizzydane » Fri Dec 09, 2011 3:53 am

Thank you Algis! that's exactly what I'm doing right this minute - reading other people's stories! It is scary but at the same time it's helping to know that others have experienced what I am going through - I have so been feeling like I'm losing my mind!
I'm supposed to be going into work but I'm really struggling x I'm thinking of letting my boss know how I'm feeling today and asking if I can work from home - today is a bad one physically & emotionally - to be honest I don't feel like I can face anyone without bursting into tears! I feel so useless!
x
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby Algis » Fri Dec 09, 2011 8:05 am

Cool down dane :) Think twice before speaking around... Some work can be done from home without having to raise a "boss' specter" of diseased employee... Unless he's a trusted friend; in which case he's not really a boss and inversely reciprocate :D

Check it out carefully and make sure all needed facilities exists for you to perform your job as good (or even better - that's the argument you should provide) from your home.

Be well :)

Algis

**EDITED by Algis ***

After reading again your 1st post; I would also think you are over stressed or under heavy pressure... Relax, let some air goes in :) And smile, even when it is tough...
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby Ute » Fri Dec 09, 2011 8:28 am

Welcome, kizzydane !

TIMS will offer you a lot of support indeed.

Meanwhile, have you considered taking a week or two vacation from work? It might help you a lot in dealing what you've been going through at the moment.

Just a thought.

Stay calm
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby kizzydane » Fri Dec 09, 2011 8:39 am

Hi Ute
I'm going to be off for two weeks over Christmas - I can't wait! I would take sick leave - I desperately need to - but I was off recently with the flu & last year I had to take a lot of sick leave due to having a breast lump removed - that op was fine believe it or not! I only had the Friday & the Monday off for that - but when they removed it they damaged the ducts & I ended up being off with 2 lots of surgery that required a hole the size of a golf ball to be packed daily for 12 weeks until it healed from the bottom up! So - with the personnel dept watching everyone like a hawk sick leave is out of the question!

Algis - luckily my boss is also a friend! I sent her an e mail explaining that I'm rock bottom today & she is fine about it! She knows what I'm going through at the mo and is ok for me to work from home when I can x I just hate this waiting game - hopefully I'll see the neurologist soon, get the tests done - and deal with whatever! x
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Re: Scared, worried, frantic, desperate to talk to someone!

Postby Algis » Fri Dec 09, 2011 9:14 am

@Dane: best of luck then :) Keep us on the juice ;)

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