Forum

Newly undiagnosed

Hi everyone, Feel a bit of a moaner being undiagnosed for only 4 months since I first saw my GP. Especially when so many of you have been in limbo for months and years. But I’ve gone from super fit to super sh*t in just 3 months. Providing what’s going on with me is MS of course. Initially I went with what I thought was a combination of menopause, backache and getting old. But on reflection I think I’d been having symptoms for at least 2 years. To cut a long story short I quickly developed virtually every MS symptom with a vengeance and some,so have already seen a neurologist, had masses of blood and urine tests, 3 MRI, tried 2 different drugs and been referred to another specialist for my balance problems. So far my results are: irregular red blood cells on initial blood tests put down to new equipment used so dismissed. Mild ataxia on my left side following initial exam by neurologist Abnormal arachnoid granulations on my initial MRI of my brain which were then dismissed as not a problem on the second MRI with contrast. Awaiting results of latest blood tests and spine MRI and see the other specialist next week. I don’t have a brain tumour and haven’t had a stroke. My blood has been tested for loads of different things that Id never heard of or knew existed all negative. I’m on gabapentin only 600mg at night which does seem to help me get the odd nights sleep and arrested my bladder issues a bit. But I’m 49 and feel 99! And so incapacitated I haven’t been able to work for 3 months. It appears that unless you have a text book presentation of symptoms with lesions detected in specific areas of the body that only then do you have any hope of an early diagnosis. I’ve never been a text book cases for any illness I’ve had even as a child so I’m really concerned about the delay in getting the correct treatment even if it isn’t MS. My questions are : Can your first relapse come on so quickly and be so disabling? Can a relapse last 3 months or more? Anyone just have spinal lesions? But still have all the other symptoms associated with ones on the brain? That will do for starters as I’m trying to keep it short or I could write a book!

Hi there! Welcome to the forum!

I have no idea what Arachnoid Granulations are - I googled it and still don’t understand I’m afraid!

As for the text book presentation - some do have straightforward symptoms with straightforward evidence on MRI’s etc to back up a quick and definitive diagnosis - but if you read back on here most people actually don’t - well sometimes not at first anyway!

Relapses come in all sorts of packages - they can come on slowly or suddenly - perhaps following an infection or stressful event - but often for no reason at all and yes they can last more than 3 months!

You can have spinal lesions with symptoms associated with brain lesions - sometimes very small lesions on the brain don’t show up on MRI but can cause problems if they are in an important part. Also the spinal chord is basically a ‘carrier of messages’ to and from the brain so any interruption here can cause a variety of neurological symptoms.

I’m not being much help am I? I think it’s the usual case of going with the flow and waiting for those results I’m afraid and in the meantime keep using this forum for support. Also it’s worth asking if you can change your Gabapentin regime to during the day as well - I’m on 300mg 3 times per day which is a pretty low dose - and it makes a big differnce for me xxxjenxxx

Hi There seems to be no way telling what your relapse will be like, different for everyone . My first and only one came on overnight and still here 4 mths later, although a lot better than I was but still off work. Sorry hope you feel better soon. Gray

The one thing that stands out to me, is the irregular red blood cells, if these are enlarged this could be indicative of bit b12 deficiency, which can mimic ms, there for maybe a good idea to ask them to check that out if they haven’t already. :slight_smile:

Hi guys and thanks, You may not think so but your comments have helped. And yes I think I’m going to have to go with the flow and wait for my next lot of test results. Although every time they’ve come back negative I really want to whack someone with my walking stick! Lol. I will ask about increasing the gabapentin when I go back and taking it through the day too as I feel it is doing a little something and it may help my back and leg pain which seem to be immune to any other combinations of painkillers prescribed by my doctor. I didn’t really understand the arachnoid granulations either. Just that everyone has them but if you have more of them than the average or they are a bit larger than the average they can cause problems. So although mine are abnormal whether in number or size they are not interfering with anything in my brain. It’s interesting to note that very small lesions may not show up in the brain too. I think I read somewhere that they show up best when they are active which can sometimes be only 6 weeks. So does that mean they only show up when in relapse? If so that’s a pretty small window of opportunity to find them This MS thing is a real mixed bag Take care

Hi guys and thanks, You may not think so but your comments have helped. And yes I think I’m going to have to go with the flow and wait for my next lot of test results. Although every time they’ve come back negative I really want to whack someone with my walking stick! Lol. I will ask about increasing the gabapentin when I go back and taking it through the day too as I feel it is doing a little something and it may help my back and leg pain which seem to be immune to any other combinations of painkillers prescribed by my doctor. I didn’t really understand the arachnoid granulations either. Just that everyone has them but if you have more of them than the average or they are a bit larger than the average they can cause problems. So although mine are abnormal whether in number or size they are not interfering with anything in my brain. It’s interesting to note that very small lesions may not show up in the brain too. I think I read somewhere that they show up best when they are active which can sometimes be only 6 weeks. So does that mean they only show up when in relapse? If so that’s a pretty small window of opportunity to find them This MS thing is a real mixed bag I could be in my first relapse and don’t know it. Take care

Hi Red blood cells thing already checked for b12 and I’ve had numerous other blood and urine tests by my GP and neurologist all negative. The latest ones are for creating kinase and ESR and some basic follow up ones just to double check everything. So fingers crossed something will show up at some point. Thanks for your comment though.

That’s good to know, hope you get some answers soon, nothing worse than the limbo you are in, as I am in exactly the Sam boat since January this year. Hopefully we will both get somewhere soon xx

Hi ruby- if increasing gabapentin doesn’t work then you could ask the gp about trying pregablin- it’s a stronger form of the medication made by the same manufacturer but its more expensive so gp’s normally like to prescribe gabapentin first. The dosage is pregablin needed is much less than gabapentin because its stronger - worked for me when gabapentin didn’t!