Covering old ground, AGAIN! MS??

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Covering old ground, AGAIN! MS??

Postby JemmaB88 » Mon Mar 30, 2015 1:32 pm

Hi all,

I have been through all of this once already but I really am concerned that I have MS. About 3 years ago I had a bad flare that caused such severe symptoms I ended up being sent for an MRI to check for lesions/evidence of MS. And I am here yet again.

At the beginning of the month I had 2 weeks of daily cluster headaches that made me vomit and almost lose the sight in one eye. My GP put me on DHC 90mg twice a day, Codeine 30mg up to 5 tablets a day if needed and Paracetamol as needed. This seems to have helped the pain but I have several new/returning symptoms appearing. I am beginning to suspect multiple sclerosis again despite a clean MRI in 2012.

Here are my reasons;

- I am even more fatigued than usual. I am falling asleep in the day at least 3 times. Yesterday I was sat on the sofa with my baby asleep on my lap and the next thing I knew it was 2 hours later and my baby was awake and picking my nose... This is very unusual for me. I am usually tired but I can fight it. Right now I don't stand a chance.

- My feet are numb. My toes and the soles mainly. Also a patch on my leg.

- I get pins and needles down the whole of a limb. Both arms and legs have had this. My hands get tingling feelings.

- Areas of skin burn. It feels like I have plunged my hand/foot/arm in to boiling water.

- I am having to wear my glasses a lot more frequently. I originally had them for reading for long periods and for driving. I had them tested recently. I get shadows in my peripheral or squiggly lines while I have a headache.

- I get pain behind my eyes which then turns in to a bad headache. This also causes nausea.

- I am clumsy. I wobble when I stand, my legs are unreliable to the point that I am considering the use of a cane. :(

- My body feels exhausted. I feel like I am walking in water up to my waist or that I have run for hours. My legs feel heavy and my arms just feel useless.

Now this could all be down to new meds and an ever increasingly heavy baby which I almost always have on my lap or in my arms. He is teething so he is very upset and clingy. It is easier for me to hold him and he be quiet than scream while I have a headache/migraine.

I am preparing a list to take to my GP next week as I wish to request yet another MRI. I am concerned there were no lesions on the first scan but I could still be dealing with the condition.

Would you be concerned? Or should I just put it down to a new med. It is just a modified version of what I have been taking for years anyway so my body shouldn't have reacted too much.

Not sure what to do!
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Re: Covering old ground, AGAIN! MS??

Postby *Lisa* » Mon Mar 30, 2015 3:36 pm

Personaly i would always get new symptoms checked out and any concerns you have.

It may or may not be but i would see your GP as a precaution.

A friend of mine had a scan which did not show up anything then her vision started to play up, she practicaly begged for another MRI and this time it did show up MS. Many illnesses can take a while before it shows its head so to speak.

Have you had diabetes ruled out?

Once everything has been re-checked then you know its the fibro.

You do tend to have your own instincts that something is just not right so i would speak to your GP
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Covering old ground, AGAIN! MS??

Postby Misty68 » Sun May 10, 2015 11:45 pm

Hi, I'm a newbie to these boards so I hope you don't mind me posting. I was DX with fibromylgia 10 years ago. All your symptoms are consistent with fibro. Vision loss due to cluster headaches/migraine (not just aura but actual blackness) are a recurring problem. I found taking too much codeine makes all head & eye pain and tremours worse. GPs just keep handing them out but the truth we all learn after years of trial and error is most meds have side effects that can make things worse in the long run. I was on around 240mg of codeine a day and deteriorating in my health rapidly. I had right arm and leg tremors that were so bad people would stare. My head pain was extreme, like sunburn on the inside of my skull that was being scratched and burning along with that horrible crushing pressure that feels like your head is being squeezed in a vice. I also get the optical neurosis which feels like a knitting needle or thin knife is being stabbed into your eye. I also get Trigeminal Neuralgia and TMJ. These pains are common among fibro sufferers. Balance problems are all part of it. At the beginning I used to wobble over into hedges walking my son to school, this then went on to passing out which resulted in me banging my head on the pavement several times and waking up to a ring of concerned faces. This was due to total exhaustion. I had been a single parent for 8 years at this point, with all the sleep deprivation that involves plus I was still working as a classroom assistant at a primary school. I lost my job when word got back to the headmaster that I had been seen using a walking stick :( But using a stick is now essential for me to go out at all. I was assessed by the DWP doctor as they refused to let me sign on for job seekers saying I was not fit to work. I was told I should have a carer with me at all times. In an ideal world maybe, but as a single Mum I had to just get on with it. I got a mobility scooter for when walking became too exhausting. Don't underestimate how debilitating Fibro can be. Thankfully, 9 years later things are easing up as my teenage son looks after himself now so I have more me time. Pacing and rest are key to long term management. I also keep my codeine to a minimum, 30mg per day (one tablet) when I can bear it, up to 150mg on really rough days with occasional tramadol at night when I am in severe pain. I also have SLE lupus. It took 25 years for a firm DX of that ! MS is usually only tested for when sight loss becomes long term and tremors have reached an almost convulsive stage. It is very hard to get an MS diagnosis and many sufferers have waited twenty years or more for a definate DX.
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Re: Covering old ground, AGAIN! MS??

Postby JemmaB88 » Wed May 13, 2015 11:27 am

Hello. Here for an update.

I saw my GP not long after this post. She agreed that I should be scanned again. I now have an appointment to see the neurologist in June.

Since this post, I have had some more symptoms appear. I get electric shock type pain in my right arm when I reach out with it and in both legs when walking up and down the stairs.

I also have a very weird sensation happening in my feet. It feels like my toes are crossing over each other and cramping but they look normal and there is no cramp. I have also started to feel really 'big' at night when laying in bed in the dark. It sounds so weird. I feel like I am taking up all the space in the room and my face is centimeters from the ceiling... God I sound insane.

Waiting to see him/her now.
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Re: Covering old ground, AGAIN! MS??

Postby *Lisa* » Wed May 13, 2015 2:55 pm

Good luck and update us to let us know the outcome
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Covering old ground, AGAIN! MS??

Postby whoami » Wed May 13, 2015 7:17 pm

It is good that your Dr is checking things out. If you can have your B12 checked, you would be surprised at the symptoms that a low level can cause.
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Re: Covering old ground, AGAIN! MS??

Postby JemmaB88 » Thu May 14, 2015 10:12 pm

B12 was checked at the appointment after this post. It was showing as low but not dramatically low and I am on high strength oral supplements which has brought the level up to normal. I was hoping it was causing everything but it seems not. :(
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Re: Covering old ground, AGAIN! MS??

Postby crazy_cat_lady » Mon Jan 11, 2016 11:14 am

whoa!! finally someone else describing the "feeling big at night" thing, i always thought that was just me!!! lol

i have had that sensation, kind of a feeling fat event, even though im one of those horrible horrible people that cant put on weight and have been a size 8 all my life (my top weight has been 9 stone, and that was full term pregnant!!!! hate me if you want :twisted: )

ive also been having episodes of nerve issues for a long time, numbness/pins & needles and just down right weird sensations in arms and legs,(in addition to all other fibro issues of pain/fatigue etc) but the past year have been getting twitches all over, bouncing around the body randomly all day and night. but the worst ones are up in my head. similar to the " awake with a start" feeling, but while im still wide awake. and the twitching keeps me awake at night, so dr put me on Pramipexole ( one before bed) which has worked great.....at night when i take it! during the day twitching is getting worse, have even videod the latest facial twitch (god i look old and washed out on video :yikes: !!) latest head jolt was a frightner, leaving me buzzing all over, and amped up the twitching, so gonna be heading back to dr and ask to be refered to nuerolgist
tired all the time!! zzzzzzzzz
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