Feeling like a vulnerable Lab Rat

I haven’t posted for a while but check in every day. Sitting here today feeling sorry for myself so I just need a rant…sorry! I have been off work since January after a sudden attack. Both my GP and the Neuro in A&E suspected it was MS based upon the symptoms and the hospital ophthalmologist confirming I had paralysis of the Cilliary muscle in my eye. However I have had 3 MRIs (jan), (march) and (August) which have not shown anything, a LP and enough blood to feed a Vampire and everything has come back clear. The Neuro said that with a clear LP it is 95% certain it’s not MS. My hospital report says its possible MS and my sick notes state that it is MS. I have been to Mental health, who seem to think I am sane, an Endocriniologist due to a hyper prolatine reading in my last blood tests, a Hereditary/ Genetic blood test and waiting for an EMG. So I have been very lucky with all the tests but living in Spain although I speak Spanish, I am sure you will all appreciate the added complications and stress this causes. Most of the time I arrive at an appointment not knowing what to expect. I have been admitted to hospital twice, once for the first attack and the second time in August with uncontrollable tremors. I am better than before because I can now walk albeit short distances, I still have terrible tremours controlled with Beta Blockers, muscle spasms which are noticeably worse again since I stopped taking the steroids 2 weeks ago and my eyesight has not recovered completely. Fatigue and blurred/double vision seems to be an acceptable part of daily life these days. So I am now wondering if they are trying to eliminate all the options as they state it must be autoimmune due to symptoms and my age (43). My Neuro is not an MS specialist. Sorry for the rant but feeling very down today.

Hello Kirstie! God so much of that all sounds way too familiar!! I was off work for 4 months after a bad relapse in February (unfortunately my employers responded by making me redundant last month!)

Several consultants and my GP’s think it’s neurological - possibly MS. I have been undergoing lots of tests under an endocrinologist due to an enlarged pituitary gland showing up on my brain scan. My endoc tests have mostly come back normal (ish) so he thinks the gland is working ok but he will be monitoring it with scans long term.

As for symptoms - mine are similar - my vision problems have been diagnosed as due to Glaucoma in both eyes so I’m on strong daily drops now - I’m personally not convinced this diagnosis is right tho!!

Muscle cramps, spasms & fasciculations are a big problem for me as is spasticity in my calves - and the flipping HUG!!! All that makes it hard to walk unfortunately!

My MRI scans have also come back clear of lesions. I haven’t had an LP or VEP’s - I was hoping he neurologist I saw this morning would send me for them - but he turned out to be absolutely useless. My GP has referred me to an MS Specialist in Cardiff but this neuro today has referred me to one nearer home so perhaps I’ll see him sooner - I just hope he’s not a patronising pleb like the neuro!!

xxxjenxxx

Hi Jen, although its not nice to hear that you are going through the same because its horrible, it’s nice to have people to relate to. Lets hope that your MS specialist comes up with some suggestions. Luckily my employers have been great but they are only obliged to pay me sick pay for the first 12 months so this afternoon I am off to see a solicitor to see what happens after that. I am sure you feel the same as me, that some kind of diagnosis must be better that limboland. Big hugs…but the nice ones not the MS ones xxx

Sounds unbelievably frustrating Kirstie :frowning:

At least they’re throwing everything at it I guess!

Clear MRIs and LP probably mean that it’s at least 99% not MS, so it might be best that it’s not an MS specialist you’re seeing - better to see someone with a broader base knowledge and experience so they are willing to think laterally.

I hope one of those tests comes up with something soon for you!

Karen x

Thanks for your responses Jen and Karen. Looking at your other post Jen you seem to have really been through the mill but there certainly seems to be lots of support here, I hope you get some answers soon. I am keeping an open mind re a diagnosis…watch this space! Xx

Morning Kirstie x

Yes - I’m in a pretty dark place at the moment but I’m sure I’ll bounce back as usual! x

I’m the same re an open mind!

I know - they know - there is something wrong! I just want to get to the bottom of it and find out what it is and then hopefully get some help/treatment and get my life back on track - because at the moment my life is falling apart!!

But I also want to be able to ‘trust’ that the doctors have done things properly - considered all the possibilities - ordered the right tests and that those tests have been carried out correctly! I would like to trust that they have effectively communicated with each other - instead it all seems to be an uncoordinated mess!!

I’ve experienced a catalogue of conflicting opinions, information and advice. They have lost notes, letters and test results and even thought I was someone else in some of my appointments!

I first came on this forum because MS was mentioned by 3 differnt doctors after a long period of all sorts of other things being ruled out/in. It had never entered my head prior to this - but once it did - everything seemed to fit and make sense and I really thought we were getting somewhere!

Unfortunately as we all know MS can be a very difficult thing to pin down for some people. I really don’t WANT to have MS!! I just want to know it’s been properly ruled out and if/when it is ruled out I want them to find out what IS causing these symptoms!

Ewww!!! Life eh!!! xxxxjenxxxxxx

Hi Jen, we sound like we are in such a similar place. I didn’t even really know what MS was when I was admitted to hospital. My GP who sent me to A&E said she suspected MS straight away. Then I saw 2 Neuros in the hospital and 2 further hospital docs. Both the hospital doctors who spoke English said that they had all had a meeting and were pretty convinced it was MS. I was so shocked that over the period of my stay I kept questioning them and each time they said that they were now considering me as having MS. It took me about 3 months after I got home to even consider looking on the Internet, so not imaginary symptoms!! Lets hope they can rule out MS and find out what we’ve got and get us back to normal!! Xxx