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In Limbo and in agony (trigenimal neuragia etc)

Okay. My story is a long one. I’ve had symptoms of MS, but only one lesion has been found on my brain. I don’t have any more appointments with the neurologist unless anything new comes on the brain scan (I’ve got yearly scans), and I was referred to rheumatology because I am hypermobile. Rheumatologist says there’s nothing he can do to help because most of the signs don’t match hypermobility and he feels that my various other illnesses is getting in the way of a diagnosis. I’m also a type one diabetic and the burning sensation I get sometimes has been put down to that but my diabetes consultant says that’s not the case because I’ve go complications from my diabetes.

I’m 34, been suffering last few years really. Sometimes I have foot drop so bad I can’t get up the stairs. I get severe cramps at night (and sometimes during the day) all down my leg. It’s not really cramps. It’s like that feeling you get just after a cramp where you feel it could just start cramping up again. It’s on the shin as well.

then there’s the trigenimal neuralgia. I’m in agony with it. Last night I was travelling on the train and it suddenly attacked really badly. I was actually crying.

Im feeling a little lost at the moment. I get they need to wait for signs, but not sure what to do. When I had my last meeting with the neurologist, I was feeling a lot better. I’ve been prescribed diazepam for use in emergencies with the pain. I’m allergic to the drug they normally give for trigenimal neuralgia. But if it is MS or some other autoimmune, it’s likely to be a relapsing disease. I feel like I’m in a relapse, depending on my stick for walking, the TN, pain, burning sensations. There’s other stuff too but I’m too tired to write it out.

Just feeling a little lost. All the medical people I’ve been seeing are just saying we need to wait for things to show themselves. The neurologist said it could be MS, and the symptoms match, but it’s just waiting for lesions that are big enough for the MRI to show. She said it could also be other things but I’ve been tested for lymes and all the other things they usually test for.

I was put on something last year. I think it was pregabilin. It helped. I’m going to try and get in with my GP tomorrow. But is there anything I can do myself that might help?

im only about 6 weeks away from finishing my masters, so I really need to be able to focus on getting my work done.

Hi Holly. It’s sounds like you are having a really rough time I’m so sorry. One thing I learnt recently is that you have to advocate for yourself and if you are unhappy you have the right to push and ask for answers. Make sure you keep a diary of your symptoms and talk at length about how to are feeling. I can understand that “wait” as I am currently in the same boat and waiting to see if my episode was a one off or MS. I won’t know more until January 2018 when I have another MRI. I wish you the best of luck and really hope they help you x

Thanks. I’ve been put on pregabilin. I’m allergic to the drug they normally give for trigenimal neuralgia. Don’t know if it’s the drug but my balance, which is normally really bad, was even worse. I fell up the stairs last night going to bed. I also have pain behind my eye and double vision. I have to really focus and concentrate to make my vision focus and it hurts.

I have also had balance issues for as long as I can remember! I hope the medicine offers sone relief for you. I ended up in the emergency room with my episode and fortunately it sped up the process for being checked out but they still can’t confirm MS at this stage. A Masters is a lot of work. I enjoyed mine but woudnt do it again if you paid me haha.