Frustrated Mum needs help

[jackc]

I am hoping i have come to the right place. i have been reading the posts and everybody seems very friendly so i am hoping to get some information.
ok here are my symptoms:
lower back pain with spasms on occassion
extreme pain in my legs and what feels like pain moving around my body
numb toes in both feet (gradually getting worse and spreading over my foot)
numb tongue
extremely clumsy (dropping things all the time)
fatigue like you wouldn't believe (have to have a sleep every afternoon)
tingling in my fingers
joint pain (not as bad as the pain that seems to come form my muscles)
my eyelids are twitching - first just one but now both are going crazy
in shower i see flashing little lights (like fairy lights)

i have had blood tests and all have come back ok except for a high esr (65) and high crp (70) tests for Rheumatoid Arthritis, lupus etc all negative. has been discussed as possible fibromyalgia but the esr and crp threw the docs.

any ideas if this could be ms? i am really frustrated as this has been going on for ages now and i feel as if i am going downhill fast can't do things with my kids, having trouble getting through the day.

thanks in advance

[Quixotic1]

Hi, I'm the local itinerant physician here.  My first thoughts when I read you post is that you should be looked at for an inflammatory/autoimmune process and infectious processes.  The ESR, tho not sky high, is quite elevated and I wouldn't ignore it.  If you were older (more than 50) I'd suggest that they look for a illness called Polymyalgia Rheumatica.  BTW, the CRP is a similar test also looking for inflammation, but when it is elevated it doesn't say where to look.

The other thing that makes me want to say infectious is the diffuseness of the nerve sensations and the joint pain, even though you say it is more minor than the muscle pain.  One of the things you should definitely be checked for is Lyme Disease.  I have been doing a lot of reading recently about Lyme and a very good article by an MD mentioned that the combination of very diffuse peripheral problems (paresthesias, tinglings, pain) couple with joint pain was a flag to look for Lyme.  You should have a Western Blot (type of test) for Lyme.

Beyond that, you do have things that are suggestive of MS.  Yes, pain and cramps and twitches can be very prominent in MS.  ABsolutely with these symptoms you should get an MRI of the Brain and spine, You should very definitely get a Vsual Evoked Potential to check for Optic Neuritis, which is an inflammation of the nerve to the eyes and is very much associated with MS.  The fatigue is non-specific and is seen in dozens of illnesses that involove inflammation and also of involvement of the brain.  

You are in the UK?  Are you in the NHS?  I only ask because you used the word 'Mum."  

Yes, running into things is common in MS as we lose our ability to be perfectly oriented in space.  Specifically I miss doorways and run into the doorjams.  I really have trouble walking around corners without walking off in the wrong direction.  I think God placed walls and furniture around us to keep us on the path.  I picture me as a ball in a giant, cosmic, pinball machine.

See if your Rheum might order the Lyme by Western Blot, a VEP to check your optic nerve and an MRI of the Brain and spine.  The first two should be quicker to get.  And stay with us, we'll help you figure all this out.  We have lots of people here with a lot of experiences so you won't feel alone.

Quix

[jackc]

thanks for the support. pain is a pain in the butt!!
the worst thing is having to tell my kids that mummy isn't feeling well and can't do everything with them that i would like to.
here's hoping i can find some answers sooner rather than later.
i forgot to metnion that i am always running into things such as bumping into doors, people etc is this common in MS?

[floridamom2]

I am sorry to hear how much pain you are in!!  Welcome to our little support group though!  

It sounds like you know your body and you know you need to be evaluated by a neurologist.  I have no diagnosis yet but have many of the same symptoms as you.  

My head is not working tonight but I want you to know we are all here to suport you!
Take care!
Kristin

[jackc]

thanks everybody i have been seeing a rheumatologist as my muscle and joint pain is quite severe and he said that he wanted to wait a few months to see what developed and that in his opinion whatever is wrong could be one of ten things although he wouldn't tell me what they were.
not knowing is the worst feeling and i think i should get some more tests such as MRI as at least it will give me an answer one way or the other.
i will try and get an appointment with an neurologist and go from there.
have any of you had pain issues with MS??

[fishyfish]

It does sound suspicious for MS, although risnerrose is right when a lot of things can cause these things.  The thing that stood out for me was the shooting stars in the shower.  While my heat intolerance doesn't cause me to have eye issues, I have heard of others with MS damage to their optic nerves having similar "fireworks" in the shower, or when they get too hot.  Definately follow up with a neurologist and suggest a workup!  Good luck!

[risnerrose]

I know that many disorders share similar symptoms, but your list does look very much like mine: twitching eyelids, numb toes and fingers, etc.  I'm not familiar with esr and crp test.  My MS was diagnosed (just this week) through MRI and LP.  

I share your frustration as a mother.  As I headed home from work today, I (once again) was focused on getting home so I could go to bed.  I want to be the mom who rushes home to hang out with her children.  I fear my kids will remember me as always napping.  I am hoping that meds will help????

Here's to answers and improved health!

Sherry  

[6-paq]

I'm sorry you're going through all of this uncertainty with your health.  

Have you seen a neurologist?   Did any of your docs order an MRI?

I don't have any knowledge of your esr and crp test results, but as another "frustrated mom" looking for answers, I just wanted to "bump" your post up.  There are others much more knowledgable here that will come along and can give you advice.

Take care!  Pat