Searching for diagnosis for many years

New diagnosis and before diagnosis
1

I’ll try to keep this kinda short without lack of detail. Ive been feeling not quite right since I was very young. I’ve seen every specialist I can imagine, gone through every test they could offer and nothing was found. The beginning of this year i started having 30 small seizures a day, and they seemed to slowly dwindle to 5 or so significant ones a day, I went through a 5 day eeg nothing was found. He told me he didnt think they were seizures. I had an mri done with no contrast he saw nothing, i got a second opinion from a neurosurgeon in the family that saw an old lesion in my mri but nothing else. These are my symptoms

Constant fatigue

Constant dizzines

-Muscles flex,tense up and spasm in arms and legs

-Muscle twitches and jerks

-Numbness and tingling on lips,chin,cheek and face

-Tingling and numbness on hands and feet almost always

-sharp pins and needles all over

-Tingling down one leg

-Blurry vision

-Doubled vision

-a few incidents of bowel incontinence

-voice suddenly completely goes away for an hour or more

-Sensitivity to light

-Sensitivity to hot and cold

-muscle pain

-Had many seizures a day at first,now having them less frequently

-Off balance while walking

-Poor coordination

-Bad memory

-Losing focus zoning out frequently

-cant find the words for what im trying to say

-Feeling like i have no body, numbness

from time to time I have had electric shock feelings run down my neck and back and was like a burning sensation. Doctors are wanting to brush me off because my mri is pretty clear… One told me to have an LP done… im just wondering if theres a chance it could be something else and not worth pursuing??

Im

just terrified of the idea of an LP. And so afraid that id go through it and there be a false negative…

2

Hi

Just as I’m sure you suspected, no one on this forum can say whether your symptoms point towards, or away from MS. The problem with MS is that there are so many symptoms, we don’t all have everyone of them (I doubt that anyone experiences absolutely everything possible) and many other disorders / diseases share some of the symptoms.

So, it looks to me as if you’ll have to keep going with seeing the doctors to get further tests in order to hopefully find out for definite.

Here is the link to the MS Trusts info on LPs: Lumbar puncture | MS Trust

It says that 80-95% of people with MS test positive for oligoclonal bands in their CSF. This for me would be sufficient reason to have an LP. Yes, there is the possibility of a false negative, and there’s the small possibility of a false positive. But if you have one and there are O bands present, your neurologists will work harder to diagnose or rule out altogether, MS.

Sue

3

yes i agree with sue. the LP is helpful for the neurologist t make a diagnosis.

it’s not a pleasant thought but if you drink lots of fluid, preferably with caffeine, it will help.

coca cola (not diet) is a good one but take a bendy straw because if you are lying flat as recommended, it will stop you pouring the coke all over yourself.

stay lying flat for as long as possible only 1 hour is what the hospital say but insist on longer.

this should help keep the headache from hell at bay.

the procedure is like an epidural which those women who are too posh to push use in childbirth.

you can do it!!

carole x

4

Thank you both very much, i’ve been sick to my stomach lately about all of this, im going at it alone, and ive been able to reach out to a few people but it seems like they are so quick to discount me like my issues are not serious ive been un able to work, and in bed mostly for 4 months now, just wish someone would finally take me seriously, ive tired to just hide it and pretend Im fine in the past but I just cant now :frowning: . Its been so difficult to advocate for myself and try not to be knocked down by doctors when they dont want to believe theres something wrong. It helps to know that it seems im going in the right direction, hopefully i can be seen by a doctor before too long. Thank you <3