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Fed up with not being listened to

I am so fed up with trying to be heard, for years now I have complained and now feel like a hypochondriac. I have complained so many times over the years about the heaviness in my legs, but keep being sent for blood tests for arthritis. I keep telling my doctor its not joint pain I’m experiencing,it’s my muscles. At times I get bad vertigo and unable to go out, I also get numbness in my fingers. The other symptoms I get are:- pins and needles, difficulty in swallowing and when I drink it burns so much when I swallow. Urgency to wee, the side of my face often feels like someone’s squeezing my face, trouble reaching out to get things from shelves, falling over often, can’t concentrate and take things in, real bad memory, a burning feeling like your bloods turned hot, eyes go blurry and sometimes sting, feel hot even when everyone around you looks so cool, lol there’s so many things that have worsened over the tears but I just can’t seem to be listened to. I had an mri 30 May and still not heard anything from anyone, it’s so frustrating. My doctor put me on Prednisolone and amitriptylyne with me not knowing what I’m being treated for. Today still no results but he reckons I may have gad, which I think is not the case. What does anyone else think?

It’s impossible for any of us to say whether it’s gad (?), MS or something else. Do you see a neurologist? Have you had the other MS tests (lumber puncture and visual evoked perception)? Some of your symptoms do sound like MS, but as you probably know from reading through this forum, many people have MS type symptoms and are living without an MS diagnosis after years. It seems like you need to establish whether you have been referred to the correct hospital specialist? Whether they have received results from tests you have had, and what these results are? What other tests the correct (hopefully) specialist thinks you should have. Bear in mind though that correct diagnosis of MS or pretty much any other chronic illness can take years. In the short term, often people have to live with limbo land and symptom control drugs.

Best of luck.

Sue

Yes after years of going to my GP, he finally sent me to a neurologist. I see the neurologist at the hospital, but it seems like she wasn’t listening either and didn’t ask about all the symptoms. I was told I will need an MRI scan. While waiting for my scan appointment, I received a letter from the hospital about my next neurologist appointment. It was for this November 2015, a long time off. I finally received my letter for MRI scan, which was for 30 May. When I attended my scan, I asked the radiologist why I had to wait so long for my follow up appointment, I got told " because maybe she not worried about you." This made me feel good NOT. Now having had my scan I am still waiting for results. I see my own GP but he said it down to the hospital neurologist who sent me for scan tell me, because the results don’t get sent to him. So I phoned the hospital and the neurologist receptionist got quite shirty with me and said no it will go to my own GP. I then had another appointment with my GP and he said no it’s down to neurologist yet again. So now what do I do, wait till November? I can’t work because of what’s happening to me and I am sent on unnessesary courses with where the advisor talks to people like dirt and don’t stop going on about her life and her dyslexia. I have told her it’s so hard to take in what’s she’s talking about, but yet I’m still put on the spot and made to feel stupid when she asks me in front of everyone to explain what she’s talking about. I also have arthritis in both knees and Achilles tendinitis in both feet which is the less of my worries. I have read about Gad and it really don’t sound like what’s happening to me. I am not suffering from anxiety, only anxious to know what’s the the matter with me. I was married and cared for someone for 25 years with anxiety and panic attacks due to medical neglect. So I know what it looks like. Since being split from him, my life has been brilliant, so no need to grumble there lol. This is what happens to me but not all at the same time

I stand and the room spinning

my hand go numb

my eyes go blurry and often sting

my legs are so heavy

my arms feel heavy and find it difficult to reach out

Urgency to wee

very forgetful

stop mid sentence in what I’m saying, then forget what I’m talking about

pins and needles

burning sensations

when the suns out, it feels like I’m burning but I don’t tan or burn

the side of my face hurts

sometimes can’t write due to jerky hand movement

tiredness

difficult to swallow

lack of concentration

often feels like things are crawling inside me

fall over more than usual, very embarrassing when you’re in a busy high street in front of a queue of people

feeling fed up

Hi everyone so sorry to read all the problems that you have encountered unfortuenatley it seems to repeat it self every day. With out going into my health issues. I also had all the same symptoms but needed to get help as I felt I was drowning fast in all the ignorance and red tape palaver.

Mu family pulled together and payed for me to see a neurologist private whom sent me for an MRI which I never had then Followed by 2 further specialist only to find that. I had a stenosis in my upper spine neck they also said my spinal cord was dry. In places hence disc degenerative disease. My spine nips and pinches causing me to have spasms and pain. The symptoms mimic M S. But before all that I had Ben on Amatriptaline. Gabapentine and many others.

Some times it takes years to show up and it takes a good doctor or consultant to listen I saw one person whom could diagnose just by doing a proper MOT.

Hope you soon get a proper diagnosis cazb61 or some thing pops up to show your illness in doctors foggy eye site.

carol

The only thing I would add, is that your reaction to the steroids can be and are a diagnosis tool for the doctor.

I was given steroids when I first saw the neurologist, he had a spinal MRI and the he gave me a ‘likely MS’ diagnosis. I then yoo the steroids and had a brain MRI. Then later on, after discussion about events and review of the new brain MRI, MS was confirmed.

Sonia x