Hi, This is my first post, and I’m sure one of the many waiting-to-be-diagnosed that you must read everyday so am very grateful in advance for your reading this. My symptoms started back in September with a pain in my back, pins and needles in my left leg which quite rapidly spread to my left arm, right leg and right arm, which was accompanied with some numbness and pain. My gp referred me to orthopaedics, who assured me it was probably two trapped nerves and sent me for urgent physio. By this point my face, lips and tongue had gone numb. I also was unable to touch my nose and then follow his moving finger during the examination, it was like I was drunk. It’s really scary having your body not do what you tell it. The physio then told me that it was probably a problem with my central nervous system, and that they would refer me for an MRI and to a neurologist, but they did give me a crutch to help with the weakness in my left leg. During the hour long MRI (brain and all the bits of spine) I kept having awful spasms in my back making it really hard to stay still, so half of my brain MRI was a bit blurry. I had to wait quite a while for the results, but when I next saw my gp she told me that she would book me in for my operation! Needless to say I was a bit confused and scared, but relieved that something could be done about the pain. However, when I saw the orthopaedic to go through the results, she said that everything seemed normal for a person of my age (25), and we’d wait for the neurologist appointment. A week before I was due to see the neurologist, my symptoms suddenly worsened. I lost the grip in both hands (it had previously only been in my left hand) and all of the feeling in both legs, as well as increased weakness and spastication in both legs. When I finally got to see the neurologist, it was his nurse I spoke to first. She patiently listened to everything I was saying and seemed to attentively take notes. However, when the neurologist came in it was clear he didn’t want to be there. He rushed through the tests and barely paused to check the results. For example, when tickling the soles of my feet one foot reacted and the other didn’t but he just looked away saying ‘good, fine.’ Finally, he left saying, ‘we’ll probably just call this something like fibromyalgia’. That was it. No mention of what would be done next, and I was left feeling like a malingerer and a piece of ill-functioning meat. My gp eventually chased him up, and he said that my MRI was inconclusive for lesions etc. So I’m now due to have blood tests next week, as well as a field of vision test. I had an awful migraine on Christmas Day, I couldn’t look at the tv or my phone or at anything at all really and had a black spot where my nose would be. It continued to the following day and I saw like a gridline over my right eye. It has continued since then with increasing dizziness even when I lie down. My gp has told me that she and my orthopaedic doctor both suspect ms, but at this stage I just want them to say, ‘this is what you have and this is how we treat it.’ I’m getting so sick of not being able to do the things I normally do. My fiancé is a journalist so he is currently away from home leaving me with our dog who needs walked. I feel so guilty that I can’t give her the walks that she needs. I keep trying to walk through the pain and to not trip over my own feet. Sorry that this has been such a long post, I’m feeling very alone at the moment. I think I have three basic questions; 1. What will the blood test check for? I know for certain anti-bodies, but what other things? 2. An inconclusive MRI doesn’t necessarily rule out MS, especially if this is my first ‘attack’? 3. What can I do to stay positive? I’ve been quite stoic up to now, but I’m finding it really hard at the moment. Thanks in advance, Katie
Wow do I ever feel for you! I am also 25 and going through pretty much the exact same thing! It’s eerie how similar our stories are, even down to the neurologist who just wanted me out of her office. I have had several MRI’s, one of my brain had a few spots on it but the neurologist told me that was just from my braces although another doctor told me she couldn’t be sure. I really hope it doesn’t take you as long as it’s taking me to get some answers. I was told fibromyalgia once as well and I am left feeling terrible about myself and feeling like a hypochondriac when I leave my neurologist appointments. I have some doctors that think I have MS and others who have no sweet clue at this point what it is. If your MRI is clear I was told that doesn’t mean it’s not MS and it can take up to ten years for a definitive diagnosis for some people because of that. Perhaps ask your doctor about a lumbar puncture? The blood test will be ruling out other things because diseases such as fibromyalgia or MS have similar symptoms to many other diseases so they need to make sure it isn’t one of those other diseases first. I really hope you get this figured out soon.
The way that I stay positive through all of this is by writing about it. I started a blog up at http://msorsomething.wordpress.com and that’s where I voice my frustrations with my doctors and the disease. You should check it out, you may be able to relate to a lot of the things I have posted. Also maybe you could start writing about what you are going through as well? I find it very therapeutic. All the best and private message me if you want to talk!
Lisa
Hey Katie, That neuro you saw makes me mad, my blood boil. How dare he not give you full attention and be so dismissive. Did you ask for a copy of the letter he sends to your GP which might explain more fully what he’s thinking and why. But as my councillor says what’s done is done. Perhaps request to see a different neuro next time. - try to find out who is good in your area. Horrible horrible symptoms you are having. Hope you have good meds that are working. Your dog - have you a friend or relation who could walk her. Or perhaps someone from your church could - usually good people there. Your questions - not that my answers are definately correct as I’m no expert: Blood tests - vitamin D and B12 Inconclusive MRI - I was diagnosed from 2 MRIs - the second showing changes is what made the diagnosis. Staying positive - difficult one. Appreciate the little things in life e.g. a flower in the garden, wind or rain on your face, the things that people in your life do. Mindfulness is a good one. - I would google it for a better explanation than I can give you. BUT it is really good. Also google NICE (doctors law) guidelines for MS. Really good at advising you what should be done so if it isn’t you can ask for it. Hope things sort themselves out for you Hugs Minxx
What a horrible time. I too felt the neuro who was on hand when i had a hospital stay was just going through the motions. He actually asked me what i thought was wrong with me to which i said probably a virus and he said yes possibly. It was as if he was waiting for me to say ms for him to disagree. At that point no one had even mentioned it, it was the consultant on the ward round that mentioned it to me The positive is that it sounds like you have a good gp so just keep discussing with the dr. I think gp will fight your corner What i have found with the dog is shorter walks more often and also a tennis ball to allow my dog to burn off energy when not able to do the walk so much. Focus on what you can do or find some other things to keep you occupied and dont try to do so much x
Thank you everyone for replying. It sounds silly, but just knowing I’m not alone in what I’m going through makes a real difference. And thank you for the tips. You’re right my gp is amazing. I think after the blood tests next steps are lumbar puncture and maybe referral to another neurology team. Further proof she’s amazing: she’s going to make a complaint about the way that neuro and his dept treated me. I’ll definitely check the NICE guidelines before my next neuro appointment (all the way in April - five months after the last one). Again, thank you for sharing your experiences and support.