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where do I go from here...

Hi

I am new to this forum & have posted for a bit of advice. I have been having strange symptoms off & on since around January this year. It started with dizziness, being woken up & the room spinning, sharp stabbing headaches & numbness down the left side of my face. These progressed to numbness in my left forearm, pain in my left elbow & numbness in my left hand with pins & needles. I was also extremely tired, when I woke up in the morning I felt more exhausted than when I went to bed. It used to feel like I could fall asleep standing up.

I put the above down to the fact that my partner & myself recently had a baby, sleepless nights ect & your body can do strange things to you when your tired.

But then things got worse, I had two leg collapses, one after I got out of bed & another walking out of my house. My left leg gave way like it was dead & had no bones & each time I had to sit on the floor for a couple ogf minutes before it woke up. I also had numbness down my shins which lasted a couple of days & a electric shock / pain feeling at top of my legs when I sat on the toilet???So I went to my GP who refered me to a Neuro consultant as he suspected I may have MS symptoms. Whilst waiting for my appointment to see the consultant I felt fine, no symptoms, typical.

Well I saw the consultant, I was in with him for no more than 5 minutes, he was very abrupt which made me anxious and I couldnt relay everything that was happening, he made me stand up close my eyes & touch my nose & asked me my symptoms, he interupted me throughout & said he would send me for a brain MRI to check for anything major and that was that. I felt generally worse after the appointment and started having more of the dizzy spells & burning skin like I cant stand my clothes touching it, I also get very itchy.

Today I recieved a letter off my neuro which states that my MRI was normal…and that was it, no date to come back ect. So I phoned the sec who said I have now been discharged with no further action.

Is this right, I am confused, I really do not feel that my symptoms have been looked into properly, any advice on whether I should go back to the gp? ask to see another consult? Im starting to think I will have to just live with these symptoms.

Scrivs

Hello there! This makes my blood boil! I was diagnosed 8 years ago and i went for a neuro appointment last week and i was treated with the same disrespect that you were. unbelievable really as i do have ms. The neuro told me to “shhhhhh!!” several times during my appointment when i tried to explain some symptoms i was having. I am so mad still. Sorry all this is in one paragraph but my return button is not working. You definately have something going on here so please do not doubt yourself. As i see it you have 2 choices. 1. Go back to your gp and tell him exactly what you have written here and ask if you can have a second opinion. 2. Wait until you have some more symptoms then go back to gp. I would go for number 2. Ms and simular conditions are really hard to diagnose when your mri is clear. It is possible that the inflamation has unfortunately gone at the time of mri. It is of course possible this is not ms and is something else. You know your own body so dont let them fob you off. The diagnostic process with clear mri can be a long and frustrating road. Good luck and best wishes. Teresa.x

Oh and a bit of advise - when you go back with more symptoms - make a written list of everything that has been going on with dates and as much information as possible. If you write it down then you know you have not forgotten to mention something important. It is so easy to get flustered in these rushed appointments and come out thinking “oh i forgot to mention/tell them this…”. I also always take my husband with me because having someone back you up and 2 pairs of ears are good in case you misunderstand something. Take care. Teresa.x

Hi Scrivs, I agree with Teresa… some neuro’s are terrible even after diagnosis (dx). I had to change mine after dx as she was so awful.

Also as Teresa says, it’s very hard for them to progress towards a dx when the MRI is clear. It’s usually the first step towards a dx and without that there’s not a whole lot they can do.

However your symptoms are obviously bad, sound neurological, and something is going on.

Has the GP done any blood work? There’s a whole bunch of conditions that can cause similar symptoms to MS that can be detected in the blood. Many of these are easily treated.

If blood work has been done and nothing found, I would wait a while… couple of months maybe… go back to GP and ask to be referred to a different neurology department (and as Teresa advised, tell GP everything you have told us here. Don’t make your list too long though as GP’s generally don’t like that and think it’s health anxiety).

It would be worth having a look to see if you can find a better neuro department, maybe one with a specialist MS clinic, somewhere local or at least where you can get to.

I do think that the neuro you saw was terrible! Should have at least advised some sort of follow-up!

Also, take a look at the ‘sticky’ at top of ‘new diagnosis’ page by Rizzo. Scroll down the section on MRI. It tells you about scanners and why lesions do not always show up on certain types of scanners. Unfortunately we all have to become something of an expert to get through the whole business of dx!

Best of luck and hope you get some answers, and help, soon.

Pat x

Hi there. I am surprised that they didnt scan your cervical spine. have a clear brain scan but one lesion on the cervical cord which causes leg problems. Did the neuro tesrt your knee reflexes. If they were over active then this usually points to a problem on the cord.

Moyna x

Hi Guys,

Many thanks to your responses. I guess I was just abit upset yesterday.

The GP has not done any blood work so I am thinking that will be my best bet. My GP is very good so I will make an appointment to see him and discuss the whole situation. I agree that maybe that is the way forward with trying to work out what is going on with me. The strange thing is that some days I feel really good which makes you doubt yourself, but I know I shouldnt be feeling like this at the age of 34!! Im due to go on holiday next week so think I will try and book an appointment for after then.

Thanks again.

Tam x

Hi Moyna, no the neuro didn’t test my reflexes but the GP did prior to my referral but didn’t mention anything?? I was surprised that I didn’t have a cervical mri also, I just feel like I didn’t really get the full once over buy the hospital? I’m guessing that my neuro just didn’t think it was serious enough? Tam x

Hi scrivs the first neuro that I saw years ago was the same did no tests not even a blood pressure said blood results from gp were fine and nerve test dobe (dont know the name just that I had needles stuck in my muscles for it) were fine and everyone gets symptoms like mine quite normal to get burningpain, forget words etc. Was oout in 5mins discharged by him! I’d deffo go back to gp Xx