Getting frustrated

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Getting frustrated

Postby MrsGeorge » Thu Dec 13, 2007 6:32 am

I am still awaiting a diagnosis but it seems as though symptoms have been getting worse this week. I am working in a temp job and I quite often ahve to walk between departments. When I do my leg can go all over the place. Earlier today I was dizzy and my leg refusing to be controlled. I was staggering around like a drunk, having to hang on to walls for balance. In addition my right arm flops around because it also goes all weak and uncontrollable.

This is happening more and more and it gets me so frustrated, especially as my work don't know why. I end up telling my leg off! Is there anything I can do to control it better or improve it, or is that just how it's going to be now?
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Postby carolew » Thu Dec 13, 2007 6:43 am

Well, some people actually need to receive steroids, but if your diagnosis is not clear, maybe the neuro should see you again and re-assess the situation.
If things are changing so much, he may think differently about the approach to your treatment. good luck, Carole
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Postby MrsGeorge » Thu Dec 13, 2007 8:29 am

At the moment I haven't had a diagnosis... the neuro I saw before didn't want to know as I was moving out of the area so he didn't want to start tests. I still haven't seen a neuro here but have an appointment on 8th Jan.

I have been told by a couple of docs though that a dx of ms looks likely.

In the meantime I just get frustrated and scared by all the uncertainty and what's going on.
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Postby Loriyas » Thu Dec 13, 2007 10:25 am

Here's an idea for what it is worth: go to the ER and tell them about your symptoms, especially if they are getting worse. They may order an MRI for you. Then you will know if there are lesions. You can probably be seen by a neurologist on staff and perhaps get started on steroids. Then you can keep your appointment in January and become established as a patient there in order to go forward. But if you are having difficulty walking, balance, etc. you don't want to wait until January to get a handle on this.

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Re: Getting frustrated

Postby Lyon » Thu Dec 13, 2007 3:17 pm

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Last edited by Lyon on Wed Nov 30, 2011 7:54 pm, edited 1 time in total.
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Postby MrsGeorge » Mon Dec 17, 2007 5:48 am

The symptoms are there constantly but can be more intense at some times than others. It seems that things are worse if I am really overtired or stressed.

The truth is that I still know so little about MS and I haven't had any definite answers from doctors, I just don't know what to think.
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Postby Loobie » Mon Dec 17, 2007 7:11 am

This is typical with me as well. It is related to exertion and effort. I'm ok until I start to walk around at work also. If I only have a very small distance, I don't notice it, but if I have to walk 500 yards or around the factory, then my legs start tingling and get weak and my balance gets worse, just as you say. If I can squeeze in an hour or so where I stay at my desk, I can usually "start over". My neuro says this is typical and that's why they make me sit for a good bit of time before I do my effort related stuff in the trial. Everything has to be measured from a baseline of "rested". So that being said, I think what you are describing is typical. The more "worked up", or the more energy we use during the day, the more our symptoms flair. Even on a daily basis.
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Postby Frank » Mon Dec 17, 2007 4:09 pm

Hi,

I think it is important for you to get at least some information about MS.
As a first glance you might want to check out the wikipedia articel on MS:
http://en.wikipedia.org/wiki/Multiple_sclerosis


Some info regarding a potential steroid treatment:
-------------------------------------------------------------

- The likly regime you would get is 1000mg IV cortison over five following days.
- Maybe oral steroid afterwards for about 10 days. (There are different regimes in use)
- The short strong steroids puls does have some temporaly sideeffects but they are different compared to a low dose intake (like 10mg) over a long period. I usually experience sleep disorders, mood swings and reduced acuteness of vision.
- All sideffects are regarded as transient.

- The steroids quickly bring down the inflamation and at least should keep an MS relaps from getting worse.
- Especially at the beginning of MS one can expect that steroids restore some or all of the lost functionality, though there is no guarentee for it.

Like the others I also would strongly recommend not to wait until january.

All the best

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby MrsGeorge » Tue Dec 18, 2007 3:04 am

Thanks for your replies. I will see what I can do. I don't know that going to the ER will help as I am in the UK, and I'm not sure they would do the tests. I think they would say wait until my neurologists appointment, which is 3 weeks away. It's not that I am unconcerned (because I really really am) but I have been like this for over 2 months now, and I don't think that the national health service will move any quicker.

I will call my doctor and see if she can do anything to speed it up.
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Postby jimmylegs » Tue Dec 18, 2007 8:27 am

gah, that wikipedia article is edited by a nazi. try adding some info there, see how long it lasts.
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Postby CureOrBust » Wed Dec 19, 2007 12:59 am

MrsGeorge wrote:Is there anything I can do to control it better or improve it, or is that just how it's going to be now?
For symptomatic relief, I have used 4-AP (the basis for Fampridine which is now in testing). It doesn't totally make the symptoms disappear, but the little change I notice makes a BIG difference to how "disabled" I feel. It is not for recovery from a relapse, and a study has been published noting it may even slow down recovery from any damage.

I have seen another post here where someone (ok, only one) has noted some improvement in muscle control from Modafin (Provigil) (my next experiment in an attempt to get off of 4-AP..)
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Postby RedSonja » Wed Dec 19, 2007 4:58 am

If I might make a suggestion:
Get a stick. It stops people thinking you are drunk, for one thing, and will prevent you from falling, and make you more confident about moving about. The next time you fall you could easily break something, and the stress could start another relapse.
They do really fine sticks nowadays, including folding ones you can pop in your bag.
Bibo ergo sum
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Postby jimmylegs » Wed Dec 19, 2007 8:07 am

if you feel like taking some action on your own without waiting for the final dx, you could consider some supplements in the short term - let me know if you have any questions.
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Stress related symtoms

Postby Murph » Wed Jan 02, 2008 2:39 am

You know what I would love people to tell me how much stress plays in their symptoms of MS. I know it may sound a bit simple because studies have showed many times that stress plays a huge part in our health - BUT how many people with MS are stress heads? That is a queston??? Not being suggestive. I really know with my self that the more I feel stressed the more my symptoms increase 20 fold!!!!

Would like to know what you all think?
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Postby MrsGeorge » Wed Jan 02, 2008 7:43 am

I think you have a point! I had a really stressful job which I recently resigned from as i thought it was making everything worse, and things seemed to get better.
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