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Generally feel very unwell....is this normal?

Hi,

This is my first post, but have been reading the forum for a while and have found it very helpful to read other people's stories.

I was diagnosed with Transverse Myelitis (C2-C3) last March following sudden onset of sensory symptoms on my left side and loss of function on the right hand side.  Despite severe neuropathic pain, the distress of suddenly losing use of arm and leg, and randomly falling over, I never felt unwell. It was quite surreal.

I have since had another episode that has been rumbling on since October. MRI shows a new lesion in the brain, with the neuro saying it's now likely MS although to show only 1 new lesion is unusual. He said the location of the lesion (left front lobe) does not account for the symptoms but expects another lesion on the top of the brain to show on next MRI.  

I've just finished my third course of steroids within a year and still not much improvement in left side weakness, tremors, spasms etc. that have happened with this second episode  Thing is, this time around I feel really quite unwell - woozy, dizzy and quite disorientated, but balance is ok and I am ok  on the various neurological tests .  Neuro said this is also very common, but it is the most debilitating aspect of this condition for me at the moment and is impacting my work/life the most.  Is this normal?   Sometimes I wonder if anything else is going on.    I am on Gabapentin and Baclofen - don't think these are the culprits though as was on far greater doses during the initial episode last year.

Any thoughts are welcome!

Anne

 

  

 

 

Hi Anne, and welcome happy2

Vertigo often causes nausea and feeling rubbish. There are meds that can help (e.g. stemetil), so maybe you should ask your GP to try something?

If it's not the vertigo causing the problem, then it might be worthwhile finding out if the steroids have kicked off digestive problems (they are known for this). I say this because it's what happened to me. 

For the first 12 years after my diagnosis I had things going on (and wrong), but I never felt "sick". All changed in 2010 when steroids kicked off ulcers and extensive inflammation followed digestive spasms and then IBS. I actually now take more pills for my digestive problems than I do for my MS!

Karen x

Hi Anne and welcome to the site.  I was pleased to hear you have been receiving good advice as it really is a help when going through difficult times. 

I can only give you advice from my experience of being disoriented, woozy and dizzy (I'm a C2 person too with a diagnosis of MS and in the past have lost use of one of my arms and both legs) and to let you know that periods of this can happen from time to time but it passes. Each time I've had a relapse I've been left with some deficits but I've learnt to cope with them the best I can.  You seem to have have a large number of Steroid treatment to help you but has your Neurologist suggested disease modifying drugs (DMDs) to you? If not you should ask about these as they help you more than the steroids have done to date.

Are you anywhere near a MS centre that provides oxygen treatment as I've found this has really helped me.  It seems to benefit some people but not all but if you don't try you'll never know if uit helps you or not - I think its worth trying. 

I'm not sure what you mean about feeling unwell, is it that you are fatigued all the time which make you feel unwell.  If this is the case Modafinil helps. I was on Baclofen but this made me more weak so I had to weight up the benefits of easing the spasms or my muscles being so weak I was wobbling all over the place and falling - so I came off Baclofen. 

Have you considered taking high doses of Vit D as I've found this helps. 

Have you applied for DLA as the symptoms you are discribing sound as if your mobility is compromised so you could get some help with this.

I hope your relapses calm down and that you feel better soon.

((((((BIG HUGS))))) Mary

Thanks so much for your replies Karen and Mary.

Yep, quite alot of steroids.  Two courses of the hideous dexamethasone for 14 days and the most recent of methylprednisolone for 5 days.  That felt like a breeze compared with the dexamethasone.

Apparently as I have only two lesions apparent on the December MRI, and and have only a 'likely' MS diagnosis, the consultant said DMDs would not be advised.  Precise words 'if no disease progression how would we know if the DMDs helped,or it was natural course of the disease'!!! I don't care, it's not a clinical trial and I am only concerned with preventing further progression.  To say I was not best pleased last time I saw him in Jan is an understatement, but I see him again in two weeks and will see what he has planned for me, if anything other than the standard 'we'll wait and see'.

I recovered pretty well from the TM, apart from some residual weakness and fatigue, and neuropathic pain, but this time around, although not as extreme, I am finding the symptoms more troubling.  

I have gone all out this time around to try anything, so have gone gluten free, take Vit D and Omega 3 oil, and started on HBOT at my local centre.  Only got to session 6 when the vertigo and unwell feelings got so bad I nearly had to pull the cord to escape the chamber!  Haven't been back since, but will try to get the initial 15 sessions done at some point.  Trying to get there for 2 hrs every day, while working nearly full time, without totally running myself into the ground is not easy.

I guess it all rests on the next consultant's visit to find out when I get the next MRI and if he is prepared to consider DMDs.

Thanks again

Anne

 

 

Hello Anne

My husband has secondary progressive, but was initially diagnosed with relasing remitting about 7 years ago.  Even initially he felt unwell all of the time, he would say that the only difference is the level of unwellness.

I always understood that the one definitive way of getting a diagnosis was a lumbar puncture, so perhaps you need to read up on that and ask about it at your next appointment.  This was the case with my husband and has been the experience of someone I know who has been recently diagnosed.

I am sorry to say that in our experience it is a question of trying to manage the condition yourself. I know that is not the case for everyone but your consultant does sound wooly.  His rationale for the lack of DMDs does sound odd.

I hope you are able to take someone with you to the appointments as it does help having another head to memorise what has been said.  I would also suggest that you write out your quesitons beforehand. 

With best wishes

Hi Anne,

Suffer from vertigo now and then.

The last time was last week, i was sitting on the toilet when it happened ended up on the toilet floor,trowsers and pants round my ankles.Ended up laughing about it[if i started crying not sure i could have copped] wife heard me and came to see what was happening.the only thing that helps is an anti sickness pill[Buccastem]and lying down.[she did put a towel over me]

Wife says if she had thought about it she would have taken a picture and put it on facebook.

Hope you find the answers that you are looking for.

Take Care.

Chris.