Don't know what to do

Hi, I’ve joined this network today hoping to read similar stories to my own as I don’t know what to do :0(. Back in March 2010 I was rushed into hospital with a suspected bleed on the brain as I had a terrible headache and lost the feeling in both of my arms (my legs were fine). After a lumbar puncture, CT brainscan and MRI of my spine all apperaed to be ok. I had physio for 6 months to get my arms moving again and was also referred to an Endocrinologist as I had also stopped having periods since this incident. I had a number of blood tests relating to my hormones and checking my pituitary gland function and again all came back normal. I eventually saw a Neurologist in 2011 who repeated an MRI of my brain and spine and did visual field tests. My MRI’s were normal but they found I had lost the peripheral vision in my left eye but this was just to be kept an eye on regularly by the Eye clinic at my local hospital. After numerous tests and me making an almost 100% recovery I wanted to put it all behind me so I was happy to be discharged by the Consultant Neurologist. I eat healthy, I don’t smoke, I am active and have a wonderful husband and 2 sons who keep me active and a part time job. I gently trained and did the 10k in March of this year, all was looking good. Then in June 2012 I had to pull over in my car as the vision in my left eye went. I stayed calm and eventually managed to get myself home. The following weekend I woke up with pins and needles in my face and left arm. I wanted to ignore it but knew I had to see my GP. I saw him the following week and he said I should see the Neurologist again. I went back to see the Neurologist who saw me the previous year and he arranged another MRI of the brain, Visual Fields and Evoked Response tests of my optic nerves. 2 weeks after seeing him and before the tests my symptoms got a lot worse. I had pins and needles in my arms and legs, my vision in my left eye kept blurring and I was so tired all of the time. I had all tests done, my peripheral vision has slighlty deteriorated, the MRI showed a small lesion and the evoked response tests were normal. When I went to see my Consultant he informed me of the results and said the lesion is only developmental and of no concern? The vision problem itself is not enough to make any kind of diagnosis and the evoked resposne tests were normal?? He did a physical exam and agreed that I had significant weakness in my legs but that he doesn’t think my problems are Neurological. He has arranged for me to have some nerve conduction studies done but has already said that he thinks they will come back normal! I am so frustrated!!! Don’t get me wrong I don’t want anything wrong with me but there is something wrong but all I keep getting is your tests are fine or it’s not enough to make any kind of diagnosis?? I am not a hypercondriac, I hate not being able to take my boys out and play with them, I hate not being able to cook an evening meal and get so cross when one day I take 2 steps forward then take 3 steps back the next!! My Consultant doesn’t think it is Neurological but my GP disagrees, what do I do?? Also since 2010 I have not had a menstrual cycle and nobody really seems interested by this. I have asked my GP if it’s worth seeing a Gynaecologist but he said they wouldn’t know what to do with me? Please if anyone understands my frustrations or can advise me what to do next I will listen to anything as I just don’t know what to do. I just want someone to understand my symptoms and not tell me there is nothing wrong with me. I am 35 years old and I should be living my life enjoing every minute of my childrens life and I’m not :0( This isn’t right.

Hello hun. Mmmm, a lot going on there. I can identify with you, as i am still awaiting a firm diagnoses after 14 yrs. Hope that doesn`t add to your fears!

My clinical presentation says there is definitly something wrong, yet 4 MRIs, an LP, 2 EMG test, a VEP and oodles of blood tests have come back normal.

There was a weird event after a 2008 MRI showed nothing to one neuro, yet to another there were 3 MS like lesions. These mysteriously disappeared off the MRI when a 3rd neuro looked for them? Yeh, talk about going round the twist or what, eh?

I think you should ask your GP to refer you for a second opinion with a different neuro.

I hope you get some answers soon.

luv Pollx

hey guys same here i am 14years into this aswell , i hav all the symptoms then 3 months ago i lost complete balance and couldnt walk , wen i evenually recoverd my eye sight went told i hav lost field vision in both eyes and both eyes showed something wrong, 2 mri has came bac clear , i suffer memory loss now aswell , its awfull this waiting for diagnosis this is really bad this day in age u think they would b able to make a diagnosis after so many years ,

Hi le and welcome to the site

While you won’t find anyone on here with an identical story, you will definitely find people with a load of symptoms but no answers as yet, and therefore lots of people who understand what you’re going through!

Tbh, your story doesn’t sound terribly MS-like, but there has to be something going on so I’m rather surprised that the neuro doesn’t seem to be taking your visual symptoms and weakness more seriously. As far as the lesion on your MRI goes, it could well be nothing, but you deserve an explanation of how it wasn’t evident on the earlier MRI. (It is perfectly possible that the lesion is an old one and that the first MRI missed it, but they need to be sure that this is the case.)

If you don’t get anywhere with this neuro, I suggest you ask for a second opinion. I’m not a medic, but perhaps a second endicronology opinion might be helpful too - loss of vision, headache and stopped periods all suggest something wrong with the pituitary gland. I don’t know what that “something” might be, but perhaps there are more tests that should be done?

Good luck!

Karen x

Thanks so much for your advice and support, I really appreciate it x

I hope you both get some answers soon and Thanks for your honesty Karen it’s maybe an idea to try the endocrine route again??