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Author Topic: Myelitis  (Read 5073 times)

Offline LizW

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Myelitis
« on: June 10, 2016, 01:47:21 pm »
Hi all,  I am new to thsi forum, and recently was in hospital due to this condition.

It have been three months and I still am getting tingling in my legs, head and face.  Is this normal?  Does anyone else still get this?

I get Tired so quickly - will this always stay with me?  am I forever going to have to watch what i do to conserve energy?

some feedback would be great, it anyone is there.

Offline web_editor

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Re: Myelitis
« Reply #1 on: June 10, 2016, 03:22:14 pm »
Dear LizW,

Thank you for using our Forum and I am sorry to hear about your problems. 

Please do contact our helpline nurses - I am sure they will be able to help you and give you support and information regarding your doubts. Their contact details are in this link: http://brainandspine.org.uk/helpline-contact-details

The support they give is confidential so you do not need to identify yourself if you do not wish to.

I also hope people with similar experiences will come here to reply to this post.

Wish you all the best,
Aaron
Website and Digital Communications Officer for BSF
« Last Edit: June 10, 2016, 04:10:20 pm by Brain and Spine nurses »

Offline LizW

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Re: Myelitis
« Reply #2 on: June 10, 2016, 04:07:39 pm »
Hi Aaron,

I am currently not sure.  The consultant only told me Myelitis.  I had inflammation on mainly the right hand side in the cervical area.
I have recently just had my second MRI scan and have an appointment with the Neurologist next week. 

I wanted to find out if other people have the same residual after effects that I am getting.  Not sure whether it is normal or not or whether I should be going back to my doctor. 

Liz
 

Offline Brain and Spine nurses

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Re: Myelitis
« Reply #3 on: June 10, 2016, 04:29:02 pm »
Hello Liz,

Thank you for your post.
I do understand your worries with regards your symptoms.
I was pleased though to see that you have recently had a follow up MRI scan and that you are going to see the Neurologist next week.
It is still very early days for your body to recover and it is not uncommon to feel very tired or to have altered sensations on your body.
I wondered if you are taking medication and/ or if you have discussed any changes of your symptoms with your GP. You may also find helpful following a balanced diet and keeping hydrated by drinking at least 1.5lit water per day. I would also suggest listening to your body and if you are feeling tired try to rest as this may also ease some of your symptoms.
You may also find helpful keeping a diary of the problems you are experiencing (those that they are persistent and when they occur i.e. early in the morning or later in the evening).  When you see your neurologist I would suggest communicating your symptoms to him/ her.
Aaron will share your post on our Facebook page, if you also agree with that, as other people may want to share their experience with you.

If you have any further questions, please do contact the Helpline number 0808 808 1000    Mon- Thurs 9.00 am-2.00pm and Fri 9.00am-1.00pm.

I do hope this is of some help to you.
Kind regards,
Eva
Helpline team
« Last Edit: June 10, 2016, 04:42:14 pm by Brain and Spine nurses »

Offline LizW

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Re: Myelitis
« Reply #4 on: June 10, 2016, 04:40:57 pm »
Hi Eva,

Thank you for coming back to me.  Yes I am happy for you to share on Facebook, would be nice to speak to others.

I am no longer taking any medication and have not been back to the doctors yet.  Just been trying to accept and work through this. 

Makes you feel odd, when you look well, but people do not understand fully what you are feeling and why you suddenly get tired.

Thanks

Liz



Offline Brain and Spine nurses

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Re: Myelitis
« Reply #5 on: June 10, 2016, 04:52:04 pm »
Hello Liz,

You are right to say that people do not understand that you have a neurological condition, as it is common not to be able to understand what we can’t see. Please do not feel that you have to justify why you feel tired or unwell.
Aaron will share your post on our Facebook page and he will also post the Facebook link here.
Please do get back to us if you have any further questions.
Have a lovely weekend.

Best wishes,
Eva
Helpline team

Offline web_editor

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Re: Myelitis
« Reply #6 on: June 10, 2016, 05:13:25 pm »
Hi LizW

I have posted on Facebook. If you have Facebook you can see the link here and follow any  comments on Facebook also. https://www.facebook.com/brainandspine/posts/10153735554808182 

Hopefully people will comment  in the forum as well.

I have also posted on Twitter (we have a bigger reach on Twitter) and asked people to reply directly here in your forum post.

Hopefully someone will share their experiences here.

Have a nice weekend

all the best,
Aaron
Website and Digital Communications Officer for BSF

Offline bjbabcock

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Re: Myelitis
« Reply #7 on: June 10, 2016, 05:43:16 pm »
Hello Liz.

From someone who had TM in 2008 (my lesions were at C4/C5), what you are experiencing now - the tingling and fatigue - is common at your stage. Like Eva said, it's early days. Definitely keep a diary of symptoms, rest when you need to and let people know that despite looking well, it's common not to feel well. Have a look at the Transverse Myelitis Society's website - www.myelitis.org.uk - and become a member. It's free. The charity exists to support people like you and it has good links with the Brain & Spine Foundation. Also, the TM Society just published a frequently asked question document. It is based on those questions people who are newly diagnosed often ask. (It is meant to build on the TM booklet produced by the Brain & Spine Foundation, so have a read of that first.) You can access it via this webpage - http://www.myelitis.org.uk/resources.html

Warm regards,

Barbara
barbara.babcock@myelitis.org.uk

Offline Yorkshirelass

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Re: Myelitis
« Reply #8 on: August 27, 2016, 12:52:44 pm »
Hi Liz after reading your post you inspired me to join the forum  :) Like you I have myelitis which is more prevalent on the right hand side than the left. However my scan revealed the inflammation to be in the thoracic spine. Although not as severely affected as others it is non the less a scary and worrying diagnosis. It appears to be a long journey of recovery and it is sixteen months since the first onset of my symptoms. After private physiotherapy sessions I have regained muscle strength in my legs but the altered sensations  of tingling, burning, prickling etc are always with me. Sometimes not as bad but then they return. I am still having physiotherapy as to be honest it keeps me sane and the opportunity to speak to a knowledgeable and caring professional is invaluable. I have to say I have felt abandoned by the NHS and in the initial stages although I was given a referral, blood tests and MRI scan relatively quickly I didn't actually speak to the consultant face to face regarding the outcome  for 8 months. Even though I was chasing up when I would have a hospital appointment  for five of those months. I was however sent letters stating the blood test results and a brief confirmation that "anything else other than an inflammatory lesion unlikely". Google was my information source after this. It would be good to share experiences as it certainly is a very lonely diagnosis.

Offline Livinginhope

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Re: Myelitis
« Reply #9 on: November 13, 2016, 02:46:46 am »
Hello. I am also new to tbis forum. I was diagnosed with TM about theee months ago now, C2 -C3 inflammatory lesion. My sensation is altered, under a line below my shoulders. My hands are the worst and with medication I can now use them, initially I couldn't write, hold a spoon or anything. Sadly the tingling is still there. I get very tired. I totally agree that sadly people don't understand how it feels, I had to stand on the tube for 50 minutes today, struggling, the pain and agony, so tired at the end of that journey. It ruined the rest of the day, walking was a struggle, the pain although eased with the next dose of medication. The emotional pain is hard to deal with. Knowing just months prior to this I was completely fit and healthy. Now basic things are a task. There seems to be no definitive answer as to when this will end. Some days are better but I must admit I am struggling with it all. Just typing this email I can feel like a surge of tingling. I just want to be well again.

 

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