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Hello - New

Hi All,

I am new here and my name online is Cam.

In early 2014 i had woken with one side of my body numb and thinking i had slept funny on it i left it and after a few days i then was persuaded to do to see the GP. He though it was a trapped nerve and perscripted something and left me to it. The numbness never really went i just sort of learnt to cope with it and being busy never had a chance to go back to the GP. In October i was hit by crippling muscle spasms the pain would be so sudden and severe i would wake in agony and pass out with the pain. This does still happen now but less painful and following a diagnosis of Fibromyalgia and Arthritus i had a MRI scan to see if my spine was affected due to earlier and well managed damage to 2 disks. It took some time to get this diagnosis and get the MRI scans arranged.

At this point end of March 2015 i ended up on a bit of a rollercoaster which started with the hospital calling at 9am on a sunday morning asking me to come in for additional MRI scans and after spending over 2 and a half hours in the machine and a meeting with a nuro a week later i had a diagnosis of MS. (No lumbar puncture) There was a 4MM lesion on my brain along with more on brain and multiple on spine. Looking at my medical history i have probably had MS for over 6 years but to be honest joining the dots i think this hit over 15 years ago.

The numbness faded quite a bit by Sept 2015 and my rumatologist was convinced it was carpel tunnel so provided me with a hand brace to sleep with and next morning i am now very numb again more or less back to square one not sure if it was the brace or the MS but stopped using the brace. Don’t seem to have any change now in November and have recently developed very cold hand and foot (on numb side). Am waiting nerve testing to see if there is any damage. I am also being hit by waves of fatigue and sometimes just have to stop and go back to bed (not always convenient).

The Nuro was unable to decide what type of MS i have and i have recently had more MRI scans done and back to see the Nuro in 2 weeks (aprox 6 months from diagnosis).

I have met a couple of people who seam so to have similar symptoms as myself which has been good.

I have appointments for fatigue management course.

I have a MS nurse but there not really interested unless i have another relapse.

Currently on NO medication as have reactions to quite a few of them.

Any experiances you can share appreciated, apologies spelling along with MS i have some issues with writing what i want to say almost like i have developed dyslexia.

Any useful questions for Nuro also appreciated.

Cam x

Crumbs, you are having a bit of a year. I am sorry you are having such a worrying time.

Here are a few things I would be wanting to ask the neurologist, if in your shoes (but please see last paragraph):

  • What sort of MS have I got? What are my treatment options? How long do you think I’ve had it? What does that tell you about how my MS is behaving?
  • I have already been diagnosed with fibromyalgia and arthritis. What impact, if any, might my MS diagnosis have on those diagnoses? If that is not yet clear, what is the process for finding out?
  • Might one of the spinal lesions be contributing to the hand numbness that is being treated as carpal tunnel syndrome?(Neurologists can often match up spinal lesions visible on the MRI scan with problems they cause in other parts of the body - I remember mine drawing me a diagram when I had a weak hand to show where he knew there would be a lesion, long before I had actually had a scan.)

But that’s just me, talking from my own experience and with no medical knowledge whatsoever. What you need, I think, is a professional advisor, and that person should be your GP - it is the GP who has an interest in you as a whole person (hospital specialists tend to be interested only in particular bits of you!) , and it is your GP who should be your best source of advice on how matters stand and what needs to be asked or done, whether by you or by others.

I suggest booking a double appointment and having a good chat with him/her before your next specialist appointment.

Good luck.

ALison

Thanks ALison :slight_smile:

Last (first) appointment was a little like being hit by a truck, taking husband with me and a list of questions so he can check these off during the consultation. The consultation is not at a hospital but a doctors surgery as i live in the sticks but is a very senior Nuro.

Had call today from hospital and nerve induction study booked for next week should have results in before i see nuro again the following monday.

GP has been supportive they found i have no Folic Acid of Vit D in my body so taking huge doses of these over the last few months hes monitoring me for this and when i remember to take these (plus starflower oil) i do feel better but its short lived. I will be seing him after the other appointments as he accepts with MS hes out of his depth and the Nuro is the best placed to help.

Hes been through a range of drugs with me for the nerve pain including amitriptyline, Pregabalin, Gabapentin (worked for a while but stopped working and showed signs of affecting my kidneys), Have baclofen but read online some horror stories of people taking it so have been 2 terrified to try it! Doc has requested i go back in a few weeks for follow up blood tests to see if the supplements have helped and then we will have a 2 appointment session to discuss how i am feeling as look at the results.

Turned down for Blue Badge as i can walk 2 far unaded :slight_smile: actually this made me feel better up to now its oh you have MS “Oh dear”. People seam to write you off when you tell them !

I am going to attempt a fairly full day tomorrow a play date with 2 of daughters friends and then a family trip to Ikea ! I am currently sitting up feeling ok but had to have a nap earlier and finding the napping really affecting my ability to get to sleep again at night. So signing off and going to make some special tea (has a tea spoon of whisky in) and get my 2 hot water bottles and head to bed with a book. Night all.

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Hi All,

Seen Neurologist on monday following a new MRI scan and new symptoms.

New lesion on brain corresponds with the problems i am having on right side of my body and he hopes that the weakness and the fact i keep dropping things with right hand will be short term onces i get over this relapse.

Fatigue management class going well and trying to make changes to things but currently having odd bouts of insomnia.

Neurologist is going to refer me to clinic to discuss DMD, but warns the side effects might be worse than what i am having at the moment. Looking at the descriptions of these there scary !

Having left my job a few weeks ago as i could no longer cope with the 5 hour commute have been put forward for new new roles this week both short term contracts. On one hand need to do something on other not sure how i will cope.

Its funny when i was thinking about finishing my job i had visions of spending my days doing lots of fun stuff sewing, cooking even reading and have done NONE of it have been going to clinics, medical appointments, cleaning the house and shopping.

Need to take control of the house and get the family to do more. Cleaner has been on holiday and now chased to get back onto the books so its one less thing for me to do as there all complaing about the house not being tidy :frowning:

Cam

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Had yet another relapse over Christmas, right arm went completely numb could not even feel me touching it and a new brain lesion over where the brain controls nerve communication on the right side of my body.

Having been cold for months i am now swinging between to cold and to hot.

Nerve induction tests came back as being ok and no damage to the nerves so must be the brain.

Finding the Vit B12 is helping with the tiredness.

Have been refered to MS clinic and will be starting Tecfidera soon but am a little worried about the side effects :frowning:

hi cam

what a roller coaster ride you’ve had!

i was put on copaxone when i got my diagnosis in october 2008.

the daily injections were easy to fit into my daily routine but after 5 years on it, my injection sites were a mess.

so i switched to tecfidera.

yes, i had side effects but these are manageable.

  • rule 1.

take your tec halfway through a meal and always eat enough to feel fairly full.

this will help avoid gastro problems.

  • rule 2.

take an aspirin before the tec to avoid the flushing.

if the flushing develops into prickly heat, take an anti-histamine before the tec.

if you find the higher dose (Week 2) is making you sick, ask for more time on the low dose.

tecfidera has a very good rate of reducing relapses so think of it as your way to fight back!

good luck

carole x

Thanks Carole :slight_smile:

I am going onto the lower dose for 1 month prior to moving up as i am an “Allergic” person am worried about taking asprin being an asthmatic so have always avoided it.

One of my “issues” is i forget to eat so am thinking about how i can fit this into my day.

Cam

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Hi, I have been having symptoms around six years, started with painful scalp fixed pupils and poor vision, this was but down to giant cell arthritis, I was put on a course of steroids, my vision eventually corrected, but the scalp pain remained, I then started getting facial pains and my right side of face went numb. And still is, this was diagnosed as trigeminal neuralgia, I was put on gabapentin, this help but I still had attacks, then gradually more symptoms appeared over chronic pain in my arms and legs, reduced sensation and movement. I lost my stride, I cannot grip anything with my left hand. I lost my sense of taste or I should say everything tastes weird. My lips and face are numb, I get a pulsating sensation in my lower lip and left eye, I’m itchy on my face but I can never satisfy the itch. My eye sight in my left eye is poor, like looking through a kaleidoscope, I forget my words, I struggle with sentences, my hearing isn’t great and I can’t bear loud noise. I can’t walk very far due to pain and constant fatigue, I struggle to sleep as my body is constantly throbbing with pain, I have pins and needles in my feet and hands. I have a funny sensation in my lower coxycc area, which radiates down my legs. And do on and so on. My GP is convinced I have MS, I have seen a neurologist and she has requested more scans, and nerve conduction tests, which I have on multiple occasions. For the past six weeks I have been really struggling with day to say living, my fingers don’t coordinate I can’t do up my bra, I have bought Velcro fastening shoes as I can’t do buckles. This is now bringing my mood down, which isn’t me. I’m a happy go lucky type of person, but I need answers. When I saw the neurologist she said she doesn’t think it is MS but there is something wrong but she doesn’t know what. She was constantly asking about migraines which I’ve had since a child. My last brain scan was fine, and spine showed wear but nothing else. Im currently and taking notriptaline, naproxen and cocodamol to help with the pain. Thank you for reading this, I am at a loss, I feel the neurologist didn’t want to listen to me, I even gave her a diary that I had been filling for the last two years of how things are getting worse.

Hello

If you’ve had brain and spine MRIs and there were no demyelinating lesions, the neurologist couldn’t diagnose MS. They use the McDonald Criteria for diagnosis. See https://www.mstrust.org.uk/a-z/mcdonald-criteria for the detail.

Regardless of what your GP thinks, the neurologist is the only doctor who can diagnose MS. And MRI evidence or it’s absence is the only thing they can use.

It could be something else that has similar symptoms to MS. There are many other things which could cause these symptoms. I suggest you speak to the neurologist and find out what else it could be.

Best of luck. I hope you get some answers soon. It is a miserable time, being beset by symptoms but having no luck getting anything diagnosed.

Sue