Still waiting!

It's 10 weeks since I saw Rheumatologist who said she wanted to put me on Hydroxychloroquine. But as I am already under the eye clinic she would have to check with them first. Rang the hospital who confirmed they have not had a reply from eye clinic so have sent a reminder letter.

I had an MRI this week as I am also under the Nuerologist, I have confirmed Raynards and MCTD. Lupus test was negative but I have have positive P anca.

Looking at possible MS as its in the family.

My joints can be very stiff especially after stilling for a while, this is more a MCTD thing than MS right?

I have terrible fatigue which if effecting my daily life, this plus the stiffness is why she said Hydroxychloroquine might help. But what does it do to your weight?

I am on medication Pregablin for my nerve pain and I have put weight on and am finding it hard to sift. I have been dragging myself swimming and trying to eat well, but hard when I am wrecked all the time.

4 Replies

  • Hydroxy is unlikely to affect your weight but if it works it makes a huge difference on the fatigue. We are reacting differently to medication, so it doesn't work for everyone but for me it does to some extent (I.e it doesn't resolve all the symptoms but does a good job on most of them).

    May I ask what symptoms made you consider MS, other than it being a family trait?

  • Pins and needles, numbness, poor memory, blurred vision, restless legs, fatigue.

    I am under the eye clinic, Rheumatologist and Neurologist! No getting answers from anybody really. Eye clinic said my age, I'm 42!

    Neuro thought MS after 1st appointment, had MRI it was clear which only happens in 5 0/0 of cases, would not give me a Dx unless my symptoms got worse. Ie I woke up and could not see or walk!

    Seems like no one wants to give a firm Dx, been told this is harder to get since new PIP/DLA rules

  • Hi Gymbabe, may be MS but the symptoms you mention are also all found in Hughes, Sjogren's and Lupus. These are often misdiagnosed as MS.

  • Hi forgot to say I have bladder and now some mobility problems.

    Don't think it's a good idea being under 3 differant consultants at the same time as they in my case anyway, say the problem lies with the other speciality.

    As time goes on I am thinking its more Lupus than MS, but the bladder problems and a few other things do not seem to fit. Had another MRI last week so will see if that shows anything. If it does not I think the Nuerologist will discharge me anyway, so I think I need to find out more about Lupus and how it may effect me.

    To be honest when I have looked them both up, if you asked me to choose which one I'd rather have, I'm not sure.

    I suppose time will tell.

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