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Newbie. Scared and confused

Hi all, I have been dipping in and out of this forum as a guest for about a year. I would really appreciate anyone’s feedback. I’m 31yrs old. Approx 3 years ago I saw my gp repeatedly for numbness and tingling in my right leg (mostly) and stiffness around my hip. I had painful pins and needles, I think in my hands at the time. This has come and gone since. It started feeling like I was not quite with it, almost dream like quality. I don’t want to exaggerate, this was very mild, but I noticed it. I started noticing memory problems. My gp told me that the symptoms I was reporting were neurological: they would either get better or get worse and if they got worse there was nothing they could do anyway. I should have made a complaint but became quite depressed and too anxious to go back. I changed doctors.I told them about the recurring muscle twitches I was getting (they are small, they are annoying, and definitely far more frequent than anyone I know has, and come and go lasting days at a time, visibly pulsing). They gave me anti-depressants. More painful pins and needles in forearms and hands. When I clap it feels like little shocks through my wrists and hands. I have had tinnitus for about ten years. a rheumatologist diagnosed me with fibro and said he couldn’t explain mybother symptoms. In the last year I have developed slight shadow double vision in each eye. It’s most noticeable if I look at lights. It doesn’t bother me much, I just know it’s not right. I can’t look at patterns for long as it looks like they are moving and it makes me feel a bit odd. I can still read, but I know I’m reading slower. It feels like my eyes are not quite going where I want. I saw an opthamologist who told me that my eyesight is good. He can’t explain my symptoms and booked me in for a follow up just to see if it gets worse. He did not adk me any questions. he has since arranged for me to have an appointment with the orthoptist(?). It is next week. I am terrified of losing my driving license and therefore my job. I will lose my home. I am confusing my words with increasing regularity. I am having to concentrate on speaking slower. Simple tasks are becoming slower and more frustrating. From what I have read, if it is ms, no medication can improve the vision and cognitive impairment. So I wonder what the point wwwould be in pushing to see a neuro. I am swinging from trying to pretend I am the hypochondriac doctors think I am and ignoring all my symptoms but each time I seem to adjust something gets worse and reminds me and I feel hopeless.

Shortbread, I know what your going through, I’m in limbo too, three years ago my hip went numb, then my knee, then my upper arm, drs told me trapped nerve. Pins and needles in right hand, no feeling on thumb at all. Last year I had bloods done and it showed I lacked vitamin d and folic acid. Had a seizure in March, MRI done in June showed lesions and inflammation of my brain…my neuro thinks it may be MS and I have had a further MRI done on my spine, last week I had an EEG and lumbar puncture done. I get up every morning and want to scream, I have constant dizziness which means I can’t walk anywhere without anyone. My neuro is also treating me for epilespy too and has told me to stop driving…on top of that I lost my job six weeks ago which in hindsight I was struggling with it since my seizure…so feel for you, my eye sight is shocking, have a tic in my right eye too when I’m tired which is annoying but I can live with it…it’s the limbo that’s doing my head in, my poor husband doesn’t know what to do…yesterday I got very angry with it and just cried and cried…but when you come on to the forum there are people like you and me waiting to be diagnosed, I’ve been very lucky, my first MRI was done in June, saw neurologist in July and he arranged all tests very quickly for me…some people are waiting months or years. I am back to see him next month and hopefully will find out what’s going on but I know that there is something wrong just have to find out…and I am like you at times my head thinks some word but my mouth says it differently ask for a referral to a neurologist…also I have just been told that my neurologist is referring me to a neurosurgeon but have not been told why…will find out when I see him next month…but keep smiling and stay strong shortbread

Hi Shortbread - Fiona noted something I think a lot of us here have found - that we are deficient in Vit D. I know that having been put on a high dose of Vit D3 I feel lot better, concentration is improved and I don’t have so many foggy moments. Keep at it with your GP and insist on full bloods to check for deficiencies/rule other things out, and ask, no - demand a referral to a neurologist to get a specialists views on your symptoms. Keep at it.

Hi Shortbread, of course you’re feeling scared & confused, you have a lot going on at the moment. I’d say that you should go back to your GP again & ask to be refered to a neuro, that will get the ball rolling. The neuro will want you to have various tests done to be able to have a clearer picture of what’s happening with you, it’s a good idea for you to keep a diary of your symptoms to show the neuro too. Things may not be as bad as you’re thinking, there’s any number of things it could be, that’s why you need to push to see a neuro. If it happens to be MS there are many drugs that may help your symptoms…but you need to get going…& try not to worry, stress may make your symptoms worse.

Rosina x

Thank you for ypur replies. I do really appreciate it. I have had numerous blood tests. The rheumatologist told me that a blood test 6 months ago came back with a slight calcium deficit, but only slight so nothing to worry about. This has happened before when it cqme back slightly iron deficient. They have tested for coeliac’s. I am taking calcium and vit d supplements at the moment, thanks. I only started them a week ago. Can any of you advise me if there is NICE guidance as to how Gp’s should proceed with these kinds of symptoms? I think my Gp is just going to say she doesn’t think it’s neurological and refuse to refer me.

Hi shortbread, I agree with all the posts, what stood out for me in your post was the fact you have problems looking at patterns. I was complaining about that for years and my rhuematologist ignored it. It now turns out I have had optic neuritis in the past and it caused a lot of damage. Insist on seeing a neurologist.

ann x