headache

Everyday living
1

Hi

I am waiting for results for MRI with dye to confirm if i have MS but possible wont be till end of the month. I was told to get in touch if I was getting worse symptoms. before it was just double vision and headaches for 5 mins about 3 times a day.

They suspect MS but not ruling out anything yet. but I they saw one side is slow to react. they did blood test and they came back ok. I am currently seeing eye clinic and neurology clinic (but the guy i see only in 2 weekends in a month)

I had a headache all day yesterday and I woke up with one today - should i get in touch or wait?? as it might not be anything to do with it (even though its the side where they found something in the last MRI)

2

hi there,

i think that i just posted to you on a different site, suggesting that you try this one. are you in the UK, out of interest?

3

Yeah I am

4

I know some don’t like me putting this on here but tough; much better to know what you’re up against and this complaint is treatable. I refer to Hughes Syndrome or sticky blood; see http://www.hughes-syndrome.org/ and Hughes Syndrome: simple to treat but all too often ignored often misdiagnosed as MS as symptoms very similar.

Good luck

George

5

I had blood test and they came back ok

6

Hiya. Sorry you are suffering and I remember the being in limbo before diagnosis is a horrible time.

I remember mentioning to my MS Nurse 10 years ago about Hughes and she said that this is automatically checked before diagnosis when taking bloods.

I think if I were in you I would get in touch to let them know that the headaches are worsening.

I hope you get help and a diagnosis soon.

Take care.

Shazzie xx

7

Thank you I will get in touch when I can (when kids not keeping me busy)

8

hi,

if you haven’t been allocated an ms nurse, you could try either seeing your gp about one (and about possible pain relief, it’s no fun dealing with chronic pain when you aren’t looking after kids, so it must be really hard for you!), or else you could contact your neurologists PA about getting one. they’re a great resource for registering concerns and for information/support.

while i don’t wish a ms diagnosis (dx) on anyone, for many, it can be a lot better than the uncertainty.

good luck

x

9

thanks, I finally had a chance and called them and left a message with my neuorlogy consultant PA so I should get a callback tomorrow. in voicemail i told them about the headaches so hopefully they will want to see me this weekend and tell me results (fingers cross)

I did consider GP but I thought they not really dont know whats been happening except getting notes from hospital but whats been happening started at A&E and I possible get told to get in touch with them anyway so thought it be easier just to go straight to the clinic

yeah its not knowing i am hating and it isnt easy with 2 kids (3yrs old and 17month)

hope all what i am saying is making sense I am just typing without making my head think about it lol

10

yeah, it’s understandable don’t worry. it’s awful waiting, you can always have a good whine on here, it’s good to vent. hang in there, they’ll work it out eventually. i would still think about getting some kind of pain relief prescription from your gp. my worst symptom is pain, so pain management options really help.

x

11

If they don’t get back about the headache I will call gp later or tomorrow