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Symptoms but clear brain MRI , advise please

Hi ,

i am so confused and tired with all this and haven’t a clue which way to turn really. My symptoms started with a severe fatigue by which I don’t mean tired but a heavy achy feeling where I struggle to carry out simple activities without the need to have to sit down and rest a lot. I also get a feeling of breathlessness ( like my body is just to tired to breath well). This phase went and I started feeling ok again then I started having problems with my left eye. Aching blurred vision and my eye lid deciding it just didn’t want to open sometimes. I have also had an upper tingling, annoying feeling in my upper back. At times I have woken with muscle stiffness this can be calf cramps or my neck in total stiffness and I have trouble getting up or moving because of the pain. The neck pain went away so I ignored that but went to the doctors about my eye. Fast forward and I saw an ophthalmologist who booked a brain and orbit MRI, looking for mysthania graves and something else. All blood came back normal and the orbit and brain scan were normal. I got the results to that today and feel pretty down as I know there is something going on and really do match up with ms ( it’s like I know I have it but can’t prove it to the doctors) This last week I’ve had another what I call episode ( after the MRI) with fatigue, breathlessness, the upper tingling in back is back and now I have a numb tingling 4th toe on the left side. I told my opth at the hospital today and she said go back to your doctors and see what they say ( I’m in the uk) it’s been a long road to get this far and the prospect of going back to the doctor who is probably going to spout about the MRI being clear and nothing else! Help guys what do I do? I feel ill but also feel like I don’t have the right to be ill or the right to the help to cope, it’s so distressing. And it’s crushing my esteem as I’m literally being told it’s in my head and it really is not at all. My episodes seem to happen just after ovulation and after my time of the month. I’m not anemic, b12 deficient or celiac or anything else. I totally believe I’m an ms’er that just wants to be heard so I can have some inner peace.

thankyou so much for listenening,

kelly x

hi kelly

your mri may have been clear but you are obviously distressed about what is going on with your body.

ask your doctor to help you because you sound desperate to me.

it may be something else entirely but you need to know what.

could you have your hormones investigated.

you need to stop saying that you have ms because doctors like to be the ones doing the diagnosing.

hope you don’t mind me asking but how old are you.

(sorry my question mark key has fallen off).

anyway i don’t like seeing an unanswered post so i’ve sent you this half baked one.

carole x

Kelly .

Im sorry to hear you are having so many problems at the moment. But if your bloods are clear , and you have had an mri scan which is also clear , im not sure what else the Neuro Doctor or your GP can say or do .

This is a forum for people who dont want to be here who have a desease they dont want but through no choice they have and i include myself in that and that is why im writing this reply at stupid oclock in the morning because i cant sleep once again .

I dont want to make it sound like im being condesending because im not , but as Carole has said above you need to go back to your GP and speak to him/her about what is going on with your body , but unless you have lesions on your brain or spine , or oligoclonal bands results from a lumbar puncture , then you havent got ms and that is a medical fact , and no doctor in the country will tell you otherwise .

I hope you get the answers you are looking for and you can get help with the problems your body is suffering from at the moment .

Best Wishes .Iain x

Hi I totally get that I really do.

and I appreciate your answers. I haven’t had a spinal MRI or lumbar puncture , only a brain MRI. I am 40 btw and have had all my hormones checked which are apparently all normal… thanks x

Ps I have never mentioned ms to a doctor at all ( yes my own inside thought) and I’ve never seen a neuro nlt an eye doctor, hope this clarifys and thank you again x

Hi, I’m 39 years old and newly diagnosed with MS. I am so frustrated at my Neurologist and hospital. When I went to the ER with symptoms, they were dismissed initially until MRI with contrast was completed and they said probable demyelination disease. It showed multiple old lesions and two hyperintense ones. My hospital has had a breach in the computer system and I am at a standstill. I had to show my doctor results from MRI on my phone at my appointment due to the fact they had no info. My concern is my MRI also stated that it was possible CNS lymphoma. If it is MS, I can handle that, but has anyone else had the lymphoma written on the impression of MRI? Thank you for reading and please respond.

Hi Tutie

You might be better off starting a new post rather than joining on one that’s slightly different. Personally I haven’t come across lymphoma before so can’t help, but someone might be able to if you give a new thread an appropriate title.

Sue