Hi I’m new and have been going through all the EPS and MRI tests over the past month or so. I’ve spent nearly three years going through surgery for compressed nerves in my arms (had radius an ulnar nerve decompressions) and also 4 orbital floor and intra ocular injections for suspected macular degeneration. These have left me with holes in my sight, blurring and discoloured vision. The nerve operations just haven’t worked, and my symptoms seem to degenerate weekly. I haven’t had a firm diagnosis of anything yet but am now in the hands I a neurologist, which feels like a positive development. My symptoms are many and varied: - tiredness that leaves me feeling hollow and vacant; - vertigo (everything periodically just spins to one side or rushes up at me); - balance problems; - headaches; - periodic temporary loss of vision and discolouring; - feeling of swollen hands and feet with a lot of pressure type pain; - hypersensitive skin on my arms, hands, back and legs; - areas of skin on hands, arms and legs that feel freshly scalded; - severe pins and needles in my head and face area, hands, arms, back and legs. Sometimes this is just pins and needles and sometimes it is a harsh crackling sensation that has almost driven me to taking a knife to it and digging it out. - large areas of numbness on the soles of my feet, legs and face. - deep aching pain in my legs- - a feeling like my torso is crushing me and restricts my breathing - weakness in my limbs an a general feeling when I’m tired that gravity seems to have increased and I’m getting heavier; - rushing to the loo every five minutes for no reason - and saving the best for last - electric shocks when I drop my chin or twist my neck. I get these in the tops of my thighs and they make me jump about like a jack in a box! I’ve tried to write a note on here a few times but have stopped each time. I’m trying to put a brave face on and tell everyone I’m just getting on with it but this is getting harder every morning when I can’t get up or the room spins when I open my eyes or I fall over in the bathroom trying to have a shave. I’m a positive person. I have a great life. I met my wife when I was 17 and can honestly say I fall in love again every time I see her. We have three beautiful, funny, brilliant kids. I’m scared - I feel like I’ve brought a bad thing home that I can’t talk to anyone about. This would devastate our eldest daughter (she’s 11), and so we haven’t said anything to the kids. I try not to complain to my wife because I’m scared that if I start, I feel so ill that I never stop. More than anything, for the first time I feel isolated, and am worried that I’ll end up being defined by this thing that seems to be eating me. I don’t know why I’m writing this with tears rolling down my face. How do you make sense of this?
Hi Jasper,
You seem to have been given the run-around mate when I would say that your symptoms do point to a Neurological problem.
First your dropping of the chin and getting electric shocks is something called L’Hermittes; see http://www.mult-sclerosis.org/LHermittessign.html
Your vision problems are possible Optic Neuritis; see http://www.mult-sclerosis.org/opticneuritis.html
The correct procedure for diagnosis of MS is http://www.mult-sclerosis.org/diagnosingms.html but on saying that I am not diagnosing you there are lots of complaints that cause these symptoms.
Don’t want to give you too much to read but yes MS can cause headaches but they are far worse and constant in a complaint called Hughes Syndrome. This quite honestly is probably not the cause of your problems but its well worth to get your GP to do a simple blood test to prove or not; see http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736
Lastly; and this is only useful when diagnosed; if you have a mortgage check your house insurance if it covers ‘critical illness.’ If so when/if diagnosed claim.
Good luck
George
Hi, oh love, I do feel for you!
Some people may hate what I am gonna say, but it is how I really feel.
I am the cared for in our house. My hubby does his level best to look after me. I have 3 other carers to give my man a break, as he has both rheumatoid and oesteoarthritis. His pain levels are worse than mine. But he battles on regardless, as that`s what he thinks men should do!!!
My own feelings when I see a woman assisting a disabled man are very sad. I think it must be soul destroying for the man of the household to be the poorly one. Traditionally it is the man`s place to be the bread winner, the protector, the stronger one.
On this forum we read about many households where the woman looks after her poorly partner. I think women make easier patients than men.
Having said all that, I do empathise with anyone who has a chronic illness, that takes some battling (tell me about it).
A lot of what you say echoes what I have said.
BUT you are you, this condition is hurting you, but not only you, your family, your friends etc.
Your life sounds wonderful. You have a woman you clearly adore and children who complete your family.
It is an absolute swine that all these health problems are spoiling your life.
Im still having tests.....after 14 yrs of changing diagnoses and i have little faith left in the neuro dept at my local hopsital. I ded get a referral to another hospital, but the guy didnt want to see me. Hmm???
I reckon youre gonna have to let your family in on just how bad youre feeling. maybe they dont realise this. But trying to appear hunky dory isnt making you feel any better, is it love?
I think I may have waffled on long enough, yeh?
So I`ll shut up now.
love Pollyxxx
Hi Jasper, and welcome to the site
It sounds like you have an awful lot on your plate 
I don’t have a lot of time, but I really wanted to say some things before I have to switch off the laptop for the evening (hubby’s getting impatient!):
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No matter what is wrong with you, it will never define you: no matter what our conditions do to our bodies, we are still us. You are still husband, father, friend, colleague,… You just happen to have this sh*t going on too
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This is NOT YOUR FAULT. You are not responsible. You did not choose this thing. You did not bring this thing home; it sneaked in through a momentary open door and chose to pick on you. No one is to blame.
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Bottling everything up is not going to help anyone. If roles were reversed, would you want your wife to share her burdens? To do this together? And have your kids really not noticed that dad’s not well? Could they actually be imagining something far worse? Talking about it will not make it worse. We all have to face our demons to cut them down to size.
I’m sorry that this is more bullet points than proper explanation, but I mean every word.
Btw, I met my husband when I was 16. I was diagnosed with MS 14 years ago when my kids were 6 and 3. My husband and I had our 25th wedding anniverary this year and we still love each other very very much. This song means a lot to me; I have a feeling that the lyrics might mean something to you too… http://www.youtube.com/watch?v=AT9k2C9d580
Karen x