Latent MS

[Azlemed]

I saw my GP this morning and he suggested I have latent MS? Anyone heard this before?

[Azlemed]

Thanks, GP and I discovered today I have lhermeittes (sp) sign, so now he is slowly believing me. I also have only a faint headache which has lessened after using paracetamol so it feels like a small win.

I told him about job etc and he was dumbfounded, as we are too.

[Lulu54]

I am so sorry about your husband being made redundant. You mention that added stress here but I would not tell the doctor unless you are specifically asked. It's too easy for stress to be blamed ...

[Azlemed]

Warm weather is ok  hot isn't, :) even getting the shower wrong makes it worse

[HVAC]

My migraines are way worse in the heat. It is 97 today so I went ahead and took a migraine pill before I got a headache.

Alex

[Azlemed]

Just to add to all this my husband will probably be made redundant tomorrow.

[Azlemed]

It's damn hard, I already have depression/anxiety and this adds to it. I also have four kids, the eldest is nearly 11, the youngest is four and it's tough on them. It would be easy to tell the older two "yes Mama has MS" because then we could look at it together

Last night the elder two sat on my bed and were talking with me saying I don't want you to have MS rtc, but saying there's something not quite right in my brain and we don't really know what doesn't leave me with much faith in medicine.

My biggest health issue has been that because I have constant headache it is being pushed as migraine, yet I haven't heard of migraine that is heat intolerant etc.

I am currently weaning off venlafaxine as it can cause headaches to worsen and will go back onto citalopram. My specialist has had me try so many migraine meds that just haven't worked at all.

Not that I want MS, I would just like to be able to move forward etc, it's been 13 months and it's effecting my marriage. Husband is a scientist so likes nice, logical things, this doesn't fit.

[HVAC]

Azlemed how are you doing with all this? It was hard for me to get my head around it when Neurologists told me I would be diagnosed with MS in the future. I had a harder time dealing with the diagnosis process tahn I did with having MS

Alex

[Azlemed]

There are two other criteria too and if you have a good neuro you can sometimes get the meds too, it's so far behind here. Annette king is very keen to fund newer drugs and drop the barriers for MS sufferers, but pharmac will need some convincing.

[Poppy7402]

It's a bit 'ambulance at the bottom of the cliff' stuff.  However, I'm sure there must be a way for people with an edss below 4 to get DMDs as I know someone on a funded DMD whose edss certainly wouldn't be this high.

[Azlemed]

Thanks everyone, I found the latest diagnosis stuff last night and am going to print them and take them to my Dr to read  DMD are hard to get here as they are paid for by the government. The current criteria is two relapses in 12 months and a EDSS of 4. It's antiquated and there is a big push going on to ge the edss bit taken out. We also only have access to 3-4 DMD

d

[RRlady]

GOOD idea Sarah!!

[SarahL2491]

one CIS and lesions means you have MS………find a neuro who specializes in MS.  Check the McDonald Criteria, perhaps if you print it out and show it to your doc, since you are in another country, it might help!

[Lulu54]

As Alex said, Latent MS doesn't exist.  Neither does benign MS.  Jeez!  Where do these doctors get these ideas?  CIS here in the US is enough to begin treatment - I hope it gets that way in NZ soon.

[Azlemed]

It was my General. Practitioner, not my neurologist, so I am not taking it hugely seriously. He's is good at his job which is keeping an eye on my general health and well being. The closest MS specialists are either 2 or 8 hours away and I would have to see them privately as they are in a different area and I should be seen by a local neurologist.

[BonnieK1]

Latent MS. That reminds me of a woman who recently suggested to my daughter that her cancer is benign. Ignorance can have the force of a weapon. Maybe a second opinion is in order?

[Azlemed]

Nope, he's borderline about it being MS, I have had one CIS, and have had MRI show lesions, so it's wait and see... NZ does seem to be behind the rest of the world on MS.

[HVAC]

No such thing as latent or benign MS. Its like being pregnant you either are or you are not. You either have MS or you don't. MS progresses with or with out symptoms. You can be fine and then the MS catches up with you and you are not fine. Did he suggest you see a MS Specialist?

Alex