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Is there anything I can do to improve symptoms?

Hi Everyone

I am wondering if there is anything i can do or try to improve the symptoms i have been experiencing whilst i wait for more tests?

I have been unwell since 5th Feb… i had 5/6 weeks which were pretty horrendous (unable to walk more than a few steps, unable to get my words out etc) and there has been some improvement since then but it seems to have improved to a certain point and then stayed the same

I will give some background…

In June 2016 i became unwell following a chest infection i developed severe headaches, fatigue, dizziness, aching all over. I was sent to hospital by my GP with suspected meningitis. Tests all came back ok and they thought it was due to the chest infection I’d had. After feeling like this for a week i developed right sided facial paralysis. i had an mri of my brain which came back normal. I was diagnosed with Bells palsy. i was unwell for about 5 weeks and then made a full recovery

In November 2016 i developed the facial paralysis again. This time i wasnt as unwell, the only symptoms i really had were fatigue and difficulty swallowing.

On 5th feb i had gone to bed early the night before as i’d had a headache and then had this sudden feeling of exhaustion. i felt a little better the next day and went to the shops. Whilst out i could feel that my face wasnt moving properly again and suddenly felt like i just needed to sleep. I came home and slept for about 2 hours and woke with facial paralysis again. Over the next few days i started to feel constantly tired, i struggled to walk up stairs, i would have episodes where i would shake. The GP referred me to a neurologist. But things got worse i couldnt walk without holding onto something and could only manage a very short distance, i struggled to get my words out, i had trouble cutting up my food, i had terrible headaches, i felt weak, had difficulty opening my bowels. I ended up in A&E with supspected stroke. I had another MRi and they said it was ok. (although 1 consultant had said he saw sometjing in the brainstem region but then said it was ok) I was like this for 5 or 6 weeks, didnt leave the house, couldnt work or look after my children, literally laid in bed or on the sofa all day. I couldnt even watch TV or read a book as i couldnt concentrate on anything

I saw a neurologist who diagnosed migraine,… i wasnt convinced. i went back to my GP who also was not convinced! i was referred to another neurologist at a different hospital one who specialises in MS and also MND/ALS. I had an initial consultation and he said that there is weakness on the whole of my right side. My facial paralysis is not bells palsy as it does not affect my forehead. He said i needed more tests before he can determine whats wrong… MRI of brain and spine with contrast, lumbar puncture, lyme disease tests and EMG etc. Which i am currently waiting to have

Since then things improved slightly the shaking settled, talking became easier, and i was able to walk better.

However i am still left with the following symptoms: weakness, fatigue, bowel problems, twitches in my legs and sometimes arms (Neurologist called them fasciculations) some intermittent numbness in legs, intermittent burning patches usually in my legs and forehead, pain in my legs, back and neck and heels of my feet, difficulty using my right hand, facial paralysis, tight feeling in back of my leg behind my knee’s, head feels foggy.

At the moment i am mainly working from home, i am now able to do the school run (10 minute walk) If i do more than this like for example it was my wedding anniversary on Friday and my hubby persuaded me to go for a meal. Bythe time we got home i was in a lot of pain could barely walk and i suffered the whole weekend with pain and tiredness and the twitches in my legs were really intense.

I really want to try and do more but when i do it makes things worse. Is there anything that anyone finds helps their symptoms?

I am 33, normally very active, work full time in quite a stressful management role and i have 3 children. I kind of feel like my world has been turned upside down

I have 3/4 weeks still until i have the tests and will then see my consultant towards the end of June. So until then i remain in limbo not knowing the cause of all of this and i really just want my old life back

Any tips or advice would be really apprecaited

Sarah

One other wierd symptom i forgot to mention is that i no longer have any night vision. so when i turn off the lights to go to bed before my vision would adjust so that i coukd still just about see the outline of things but now i cant see anything at all its like i have my eyes shut, theres no adjustment

hi sarah

my love, i feel for you!

firstly - micro-manage your time (10 minutes doing/10 minutes resting)

take a good Vitamin B supplement.

make sure you have enough vitamin D3.

take any help on offer because you need it.

get a referral by your gp to the bowel and bladder clinic - well worth it they are marvellous nurses there.

probably you’ll be given movicol which are sachets that you mix with water.

they act as a stool softener which makes it easier to go.

if your waterworks are behaving now, there’ll probably come a time when they don’t and the bladder nurses really help.

carole x

Hi Carol Thanks for your reply! I will try to do that. On days where I don’t feel too bad I try to push myself to do a bit more but I then end up suffering for the next 2/3 days. I’ve been taking a multi vitamin for the past 5 weeks and trying to eat healthy I will definitely speak to the GP about the bowel and bladder clinic. The only bladder issue I have had was not getting the same urge to go that I used to. I tend to just go every couple of hours whether I feel the need to go or not and I do always go… Thanks again, Sarah x

Hallo my darlin,

People moan because I mention this but it is a complaint that mimics MS; can cause terrible headaches; mimics MS symptoms; causes lesions on CNS; see http://www.aps-support.org.uk/

I see you have had a least one child; so this aspect may not be affected. May not be but well worth getting it checked; careful, some doctors are un-awhere of it.

Good luck

George

Hi George Thanks for the link. I’ve had a quick look at the site. As yet I have no diagnosis so I’m open minded about what it could be. My neurologist has said he will be testing for lots of different conditions. I have already has quite a few blood tests, including looking for things like lupus, vasculitis. Would they have done a blood test for this already? Yes I am blessed with 3 lovely children aged 15, 9 and 7 Sarah x

No there is no set tests to take; see if they checked for APS antibodies. better still ask your GP if it is OK for you to take Asprin; if yes 75 mg each day for a month; if your headache goes or gets better you cracked it.

George