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Finally Diagnosed!

Hi all!

I haven’t posted since my hospital admission in March for LP and steroids. That admission saw me diagnosed with Idiopathic Intracranial Hypertension as my LP turned up a pressure of 39! Also the CSF showed the oligoclonal bands and proteins that prove demylination. However as MRI’s showed no new lesion’s they decided to call it a Clinical Isolated Syndrome and hope that I got no others. So I have been trying to adjust to living with the IIH as the medication is pants and trying to get back to work which I have just managed last week after 6 months off. The meds are so bad they affect my memory and cognition so much I am currently a nurse who is not allowed to work clinically, I am doing training, rostering and admin!

Then about 4 weeks ago the crushing fatigue hit again, new hypersensitivity and pain down my right leg this time! My GP who I cannot fault has been amazing and did covering bloods showing hideously low iron and vitamin d levels! So that answers the fatigue in some way! Was due to see my neuro yesterday anyway so knew wouldn’t get in any sooner and she agreed that it was time to diagnose the MS and refer me to the MS nurse to start drug treatment. So here I am with my buy1get1free neuro conditions! I know the MS nurse by her fabulous reputation and look forward to hearing from her, discussing treatments and having someone available for advice. Well that’s it really just feels like its been a hell of a long journey getting here!!!

Diane x

Hi Diane

Sorry about the diagnoses, but selfishly, I have to admit I’m glad I’m not the only one with MS & IIH. I was diagnosed with IIH in 2004 and after multiple LP’s and a VP Shunt in 2012 (I call Mildred!), they also diagnosed MS. These days I’m never certain which condition is causing which symptoms!

Anyway, nice to meet you and if you get a chance you should check out the IIH website. They’re fairly new so not as good as this one, but they have forums and advice etc too.

Lucy. x

Hi Diane

Sorry about the diagnoses, but selfishly, I have to admit I’m glad I’m not the only one with MS & IIH. I was diagnosed with IIH in 2004 and after multiple LP’s and a VP Shunt in 2012 (I call Mildred!), they also diagnosed MS. These days I’m never certain which condition is causing which symptoms!

Anyway, nice to meet you and if you get a chance you should check out the IIH website. They’re fairly new so not as good as this one, but they have forums and advice etc too.

Lucy. x

Hi Lucy,

My god I am so relieved it’s not just me! I am just on Topiramate at the moment for my IIH and resisting further LP’s as they were difficult! I have checked out one IIH website but the forums don’t appear as well used as this one unfortunately. Also it appears we may both use our dogs names, lol! I know what you mean about never being certain which condition is causing the symptoms not easy is it :frowning: I am coming off the Topiramate in the hope of getting back to work properly believe me I would I take a a shunt over not being able to function in the way I do at the moment.

Thank you again for replying

Diane x

I have both too - lucky us eh!! They found I had IIH whilst doing the LP - my reading was very similar to yours Diane. I had an urgent referral to the opthalmologist when they found it, but he said my eyes are fine (other than short sighted ness which I’ve had since I was about 5). The LP contributed to me being diagnosed with MS in February this year. I’m not on any meds for the IIH though…I don’t know whether that’s good or bad lol! I hope you get the help that you need from your nurse xx

So not as uncommon as I thought! Think I got the joy of the meds because I had the papilloedema (swelling of the optic disc) which now seems to be under control. I hope you are coping OK with diagnosis Nicky76 and getting all the help you need too.

Diane x

Three of us? we should start a club or something! My neuro’s put all of my symptoms down to IIH for years because they said it was practically unheard of to have two neurological conditions at the same time. Well, we showed them!

Unfortunately I didn’t get on with Diamox at all - the side effects were pretty harsh on me, but I’ve been on Amytriptalene for years now because it’s supposed to stop the headaches. Really though, I think it’s the shunt doing it’s job!

I have papilloedemas too - in both eyes, but my right is worse. I’ve lost some peripheral vision in my left eye, but it’s by my nose so I only ever notice it when they’re testing my visual fields.

Did they ever think either of you may have a brain tumor? They did with me, but it was years ago and IIH was practically unheard of. It wasn’t until a neurologist who specialises in MS and IIH spotted what it really was, that I got to breathe a sigh of relief!

Weirdly, he diagnosed the IIH in '04, then I moved and was transferred to Kings College Hospital and didn’t see him again until 11 years later, when he had also moved there and had the pleasure of also giving me an MS diagnosis! I’m going to stay away from him. He keeps giving me bad news!

Lucy. x

PS. Apologies if this posts twice. For some reason this keeps happening to me!

Hi again ladies, I guess I’m the lucky one to have not had any bad effects from the IIH. I’ve never heard anyone mention brain tumour in relation to me, thank goodness! I had a huge relapse in May last year, which had me go from working full time to being in a wheelchair outside, and using a frame at home. After my first MRI, my neuro thought I could have an AVM on my spine, as well as a probable diagnosis of MS, but after consulting his colleagues they decided it was just blurring on the scan. I had a LP in Nov, which led to my MS diagnosis, and then another MRI. Because the second MRI didn’t show any significant changes, I haven’t been offered DMDs yet, and have to wait for another relapse. This scares me as the first one has left me very dependant and applying for ill health retirement. I also take Amitriptyline Lucy, for mood swings and neuropathic pain - it was never mentioned in relation to the IIH, which seems to have dropped off the radar as they haven’t mentioned it since I got the opthalmologist’s clear report. I haven’t really thought about it much, and wonder whether I ought to be more bothered!! Xx

Hi Lucy and Nicky,

Sorry have had a busy weekend which guess what I am really paying for now! Also twisted my ankle on a dog walk yesterday morning and when your balance is as poop as mine next thing you know it hello ground! Sore knees for the 3rd time in 4 months luckily hubby was with me and the dog has got used to coming back to check on me!

I was started on Acetazolamide but couldn’t handle the side effects so switched to Topiramate. However as it has now possibly been the cause of me not being able to do my job I’m being switched again to Bendroflumethizide, fingers crossed this time! When they discovered the pressure reading they did test for everything including malignancy. They looked for cells in the CSF and gave me a CT for any ‘blockages’ all clear thank goodness!

Waiting on the MS nurse ref ??DMD’s, lot of pain tonight and gabapentin not touching it have had a nap and can see me leaving hubby to the football very soon! Hope you all have a good week and the heat doesn’t affect you too much, was two hours in a hot car that did for me today :frowning:

Diane xx