Feel like I'm in complete limbo

Hi I’m not even sure if I’m in the right place but im undiagnosed but feel like im in total limbo! Just to give a brief overview I developed sight problems in my right eye in May diagnosis was optic neuritis. Since May I’ve started getting what I can only describe as stabbing pains randomly in chest back and thighs. For the past 5 weeks I’ve had what feels like prickly heat on my right arm causing me to scratch but this doesn’t help and has caused me to damage the skin on my arm. I get weakness in my hands and the shakes. Ive had an MRI which showed a few small spots on my brain but I was told it was nothing to be concerned about but had a second MRI today. I had an unsuccessful Lumber Puncture 3 weeks ago took 2 consultants and 3 different needles in different places but they were unable to get anything and had to stop as I was screaming in pain. This lumber puncture caused me to be bed ridden for 3 days, since then my stabbing pains have increased in regularity in my back and into my hip. I just feel like I’m having painkillers given to me but not really doing much I just feel like crying because I don’t know if I’m going to have a good day or a bad day and just want to know what’s going on. Sorry for the long post.

Hey there! I’m so sorry you are going through this. Limbo is terrible Been there. Have you been given high dose steroids? It helps quicken the process of healing and for the inflamation. I’m talking about inflamation because you have been diagnosed with optic neuritis, and the cause is infalmation of the optic nerve. It can be the onset of ms but usually neurologists tend not to mention anything at first because they don’t want to scare the patient since ON can be an isolating event and have nothing to do with ms. Hence the MRI. They want to check if there are other lesions. Apparently in your case, there doesn’t seem to be a direct cause to the symptoms you are experiencing (even if- what does it mean “small spots”? if those are demyelinating lesions then it has to do with ms. But if your neurologists say there’s no correlation then okay). I think it would be wise to go to another neurologist or- even better- a MS neurologist. They will no what to do if this has to do with ms. I’m sorry for your experience with your lumbar puncture, it is indeed very annoying and in your case wasn’t even successful so that adds to the frustration

Either way, what is your right is to get to the bottom of your symptoms and always keep searching for answers. If it’s ms there are great specialists out there who are gonna help you managing the disease in the best way. It’s not even sure it is ms so let’s hope it’s not

Take care and good luck with your journey! Let us know how it goes

Hi thank you for tge reply yes I have had a course of Methylprednisolone at the beginning of this journey. I’ve had many tests on my eye and it has showed up problems with the optic nerve. The steroid helped with the pain in my eye but unfortunately the sight hasn’t returned to normal. I guess I feel like I’m having tests but not being furnished with answers I’m probably being too impatient!

Limbo is a lonley place at times, even when we have friends who know what it`s like.

I was there, on and off for 22 years before |I got a definite diagnosis.

Hope it isnt anywhere like as long for you.

Boudsxx

Yes, being in the limbo zone between consultants / waiting to see a neurologist is bothersome! I’m in a similar position, having been discharged by neurosurgery, (who thinks my symptoms are unrelated to the herniated discs in my neck), and now waiting to see neurology.

Hang in there chuck

Boudsx