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KLB

Hi,
I have been suffering daily since October / November last year with pins and needles in my hands, legs, feet, face, back. A feeling of absolute exhaustion. In the past three weeks I have developed twitching, weak legs, severe headaches, stiff neck at times, general feeling of being unwell, bruising worse than normal (deep red bruises appear when I haven’t hurt myslf that badly). When I get out of bed in the morning and my feet touch the floor, my feet are crippled with pins and needles and I have to sit down again. I have been to see a neurologist who thinks it might related to having a major op last year where I lost a huge amount of blood and almost died on October 17th. At first I agreed with him but I am now not sure of this diagnosis. I am going to see his senior (his idea) on the 31st of July, never before have I so looked forward to seeing a Dr!! I also get bad pain in my back every so often, where my kidneys are.

I have had a MRI that showed lesions but these hadn’t changed since a brin scan back in 2006. My neurologist did comment that they may now be causing problems though. I’m not sure what he meant by that and at the time I felt so rough I just didn’t ask. silly me.

I am now convinced that this is more than a reaction to major blood loss last year after surgery. I have got steadily worse over the last three weeks and this week I have gone down hill further. Should I be worried that it is MS? In the night I convince myself that I have anything and everything! I have had a lifetime of illness (Great Ormond Street baby) and in the daytime I rally round and can feel ok about things and then convince myself it is just a virus!

I doubt anyone can really say much to this but just venting how worried I am helps.

Hi KLB, Firstly, welcome to the forum.

What a bad time you’ve been having. No wonder you are worried.

Some of your symptoms do sound MS-like, but there are a whole bunch of conditions that can cause similar symptoms, so impossible to say at this point if it is MS.

The bruising is not a symptom of MS.

Normally for MS they would expect to see lesions separated in space and time. That would mean that in your recent MRI they would expect to see new lesions (that didn’t show on the previous MRI) and in a different part of the brain.

The neuro though is obviously thinking that something neurological might be giving you symptoms as there are lesions on your brain, although there hasn’t been a change in 6 years.

He’s done the right thing in referring you to a more experienced neuro.

I know it’s very hard, but you are going to have to wait until the appointment with the neuro to get any more information. Luckily the appointment is very soon so, hard as it is, it’s not too long to wait.

Make a list of your major symptoms. Don’t make it too long but specify the symptoms that you have put in your post (include the bruising).

Hang on in there. It really isn’t very long until the appointment and nobody can tell you if it is or isn’t MS on here. As I said, there are other conditions that can cause the same symptoms, some as simple as vitamin deficiency.

Keep in touch and let us know what happens at the appointment. Take heart that you are seeing a specialist and will hopefully have some answers very soon.

Pat x

Hi KLB,

Just as a possibility see http://www.hughes-syndrome.org/symptoms.htm this complaint causes bad headaches and a skin disorder that could be looked on as bruising.

Ask your GP if they think it is possible and could they do an anticardiolipin antibodies blood test.

If it is Hughes this can be easily controlled perhaps returning the person to normal health. This syndrome can cause lesions also.

Good luck

George

Nothing to add to the other replies, but just wanted to say hello and welcome - I hope you get some answers soon.

Karen x

Hi,

I had my blood tested for any clotting problems, liver function, full blood count and all came back fine but will look at Hughes. Isn’t that linked to Lupus?

By lunchtime yesterday, I felt awful again and really struggled to take my four year old to a friends house. I sat in their garden and I didn’t say a word to my friend about how I have been feeling but she commented on my legs twitching as the sun kept cathing the muscles in the light. It looks like there is something crawling under the skin! I guess I would make a great extra in Dr Who?!

Anyway, thanks so much for taking the time to reply to me.

Enjoy the sunshine!