Hi, For 6 months I was experiencing double vision, numbness/pain/tingling in my right leg, restless legs and a tingling sensation in my face and I completely ignored it. It came and went and as I was really tired, I blamed it on that. When the tiredness went, a few days later everything else went. Then the numbness stayed and my neck and back started to feel like someone had hit me repeatedly with a bat and I blamed it on my job, but I never had any tension. Then I developed a tremor in my arm, my speech started to slur and I spent days physically struggling to wake up, get out of bed for the stiffness and stay awake. So I went to the doctor and was referred to neurology. Last week I thought I was going to die, the pain around my chest was horrible, my right leg was a lead weight but tingling. It didn’t even feel like my leg and I had no control over my right arm. I eventually went to the doctor who said she was doing to ask for me to be assessed over the weekend and sent me home to wait, but I took 2 seizures (something I’ve never had before) and ended up in an ambulance on my way to the hospital. Nothing was done really other than monitor me, then tell me there was an urgent referral into neurology. On Sunday the same thing happened. When the paramedics attended they told me A&E would do the same as Friday and told me to contact my doctor the next day. I saw my doctor the next day and he examined me, took bloods, checked my babinski reflex, my muscle tone (increased) and my reflexes (intact) he also started me on 900mg of gabapentin and told me he was arranging a brain scan as a matter of urgency. He asked me if I knew of any family history of multiple sclerosis and then told me he wasn’t a neurologist but I was presenting with signs of the illness. Today I got a call from the hospital asking me to go I’m for an urgent MRI. I attended a little after 5pm and the radiologist advised they would be doing a full scan but had been asked to focus on my brain, spinal cord and C2(?). Afterwards they wouldn’t give anything away, they just said that the neurologist would be in touch in due time. I asked if I should be concerned and she said, all she knew was she’d been asked to do an urgent mri. I asked if it was serious would I be contacted quicker and she said, I’d be contacted once the neurologist had reviewed the images. I get I may have sounded pushy but I don’t know what to do. I’m 33, I know no one who has been through this process and I just feel so alone. I’ve been reading this forum and sites and I know that everything can be managed with medication and therapy so I’ll still be able to work etc but it’s just the not knowing and now I feel that the radiologist would have said if it was not good? But everyone around me just keeps telling me I’m young and it’s probably just stress. Sorry for the length of this post, I really just wanted to explain everything and see if anyone can offer any advice or even their experience with the radiologists? ,
Hi DK
I have been experiencing a lot of those symptoms over the last couple of months (less the seizures and chest pains). I had my brain scan 3 weeks ago and had the review with the consultant today. I like you was anxious about that 3 weeks wait. I was told by the Neuro secretary that there is an initial review so if it was determined that you required an urgent operation (like a brain tumour) it would be picked up and you would be fast tracked. The secretary said MS would not fall into the same urgency bracket as a brain tumour so you might need to wait a couple of weeks.
Like you I have the double vision and I am pursuing this separately. I went to the optician who has now referred for a hospital appointment with an eye specialist. There might be value in you doing the same if you have not done so already. Sorry that you are going through this.
Kind regards
Jonathan
Hi Jonathan, Thank you for replying. I have been following your posts. What is the next step for yourself? 3 weeks really feels like an eternity at this point, doesn’t it? I wear glasses and recently had an eye test and they advised there are signs of optic nerve atrophy but they would keep an eye on and would recheck in 6 months (that was around 2 months ago) maybe I should chase it up? I’m just so overwhelmed. I have two disabled children, one of which requires a lot of care and I was working part time but have been advised at present that isn’t suitable and been signed off. My GP is catching up with me next week to see how I’m responding to the gabapentin. I don’t know if anyone else has been placed on gabapentin? I was advised whilst it would control my seizures it should also help with the pain and discomfort in my limbs as well.
Hi DK
I am sorry to hear about your situation.
I am going to have my double vision looked at by an opthalmologist. If I can get that fixed (probably through a special pair of glasses) I should be able to work as long as no further deterioration in current symptoms. The Neuro seems to believe I don’t have an underlying condition but is interested to understand what comes out of the eye exams. It is possible the eye sight is not linked to the other issues. I am a contact lens wearer and a few months ago i broke my glasses so began wearing my contact lens for longer periods. It is possible that this caused my eyes to dry out resulting in the double vision. The neuro is open to doing a scan of the spine and lumbar puncture if I want to. I am going to give it a couple of weeks to see how I get on. I had a very stressful incident in November that might have been to trigger for these symptoms. This has been compounded by the stress of worrying that I have a serious condition like a Brain tumour, MND, MS, Parkinsons etc… The fact the the MRI was completely clear has given me some comfort. I am going to try an acupuncture session to see that can have any effect.
3 weeks does seem like an eternity. I think I read that in The US they get the results the next day. In your position I probably would follow up on the eyes.
Kind regards
Jonathan
Thought I’d give an update and see if anyone has any input. I had 2 further seizures on Wednesday so back to the doctor. He advised my blood work was OK apart from prolactin being extremely high so definitely having seizures so definitely neurological issue. Rechecked my reflexes and they are absent from my ankle and knee. I have increased muscle tone in my arm and I have the babinski reflex. Doctor advised there is a strong probability of MS he just needs it confirmed. He said my mri scan wasn’t back yet but he would be looking to have a lumber puncture carried out shortly after the results. He’s upped my gabapentin to help with my seizures and tremors and put me on tramadol for pain. I’m wondering if he has the results of my mri but has to discuss them with someone else. Why would a GP say this if there is a chance I don’t have it? Is he preparing me because he knows my personal situation and knows I need worst case scenario? I’m so confused.
Thought I’d update. Brain MRI has came back clear but they aren’t confident to rule MS out as I’ve only been having symptoms for the last year and only experienced one episode that would be considered an attack. Neurology will pick up now, but my doctor says he’s very surprised my MRI is clear. I feel so, I don’t know. I’m not making this up, everything else has been ruled out, is there any point in still meeting the neurologist? The doctor said its even possible to have spinal lesions without brain and no lesions but a positive lumbar puncture but at this point all investigation has to be handed to the neurologist. Anyone else been here? I just don’t know what to think.
Hiya, I’ve been where you are. In 2018 I had symptoms, worst was ON, also had altered sensations and fatigue. I had a clear brain mri. I saw the neurologist 8 months after I had symptoms (still had altered sensations but was referred to a dermatologist with no joy), neurologist gave me the 100% all clear, in and out in under 5 mins, stop wasting his time. 2020 vision loss, lost use of arm, weak left side. Gp and opthmalogist have documented the weakness tests they’ve done. I can only suggest keep a log of your symptoms as this time they’ve been more interested because of a new symptom (weakness) and I think because it’s physical, it’s not just my word, it’s clearly visible. Keep your chin up, document everything. Make a list of what to ask the neurologist if they say it isn’t ms. Ask what the next steps are. Hopefully you’ll get some answers
Hi
Have they mentioned FND to you?
kind regards
Jonathan
Hi DK, it really is an awful time for you. No wonder you are scared…I dont know how common seizures are in MS… In December, I was diagnosed with PP spinal MS…I have no lesions on my brain byt several o my cervical and thoracic spine. It has taken 22 years to get my diagnosis. My initial symptoms were; foot drop and falls bladder and bowel accidents leg stiffness and spasms fatigue Bouds xx
I was diagnosed with rrms last year.I have been to see the consultant and nurse to get my 2nd dose of mavenclad,and the consultant basically told me that the eye pain I’ve been getting is not linked to the Ms and I should get my eyes tested(which I already have).He also implied that my mood was low,and I need to sort myself out before anything else. As I understand it Ms causes pain,fatigue,memory problems etc all of which I experience I’m in constant pain and tired (which he also put down to a low mood).Has anybody else been treated like this? And am I wrong in thinking that these symptoms I get are linked to the Ms?
I understand what you are going through as I did too for over 26 years. I’m now almost 70 and this past September I was finally diagnosed with MS. Like you but opposite my brain had numerous lesions and the CNS Fluid didn’t have the Bands required to say YES MS. If you have questions you can message me and we can chat. You are not alone in this endeavour in life my friend.
Don’t worry about grilling the radiographer; they’re used to dealing with worried and frightened people, and play even the most pressing and anxious enquiries with the same steadfastly straight bat. You won’t get anything out of them, and quite right too.
Your GP sounds on the ball, which is good. Nothing to do now but wait until the MRI has been formally reported upon by the radiologist and you discuss the findings with a hospital specialist neurologist. I assume that such a consultation is in the pipeline? I hope you get some clarity soon about what ails. The not knowing is very wearing on the nerves.
MS is a bugger, and I hope you haven’t got it. If you do, the treatments are very good, as you say, and getting better. The picture on drugs for RRMS is transformed from when I wax dx 20+ years ago, and we in our turn were much luckier with drugs than the generation before us.
Good luck with it all.
Alison