angelbum 19/02/15
Last reply 3 years ago
Hi all newbie to the site

Hi all just signed up as since my 20s I have flares relapses that last about 6 weeks at a time and perhaps I get 1-2 of these a year . My latest one being triggered by the flu . When I realised by around the 3 rd week that it couldn’t be flu anymore .it got to the point that I couldn’t move out my bed and had to get the Dr into my home and got a prescription for steroids . It was only then around 4 days was I able to move again . These flares literally knock the stuffing out me . My eyes were terribly affected pain and swelling and vision was blurry for weeks . I also have terrible pain stiffness and spasms . Basically I don’t feel at all like myself . My body just seems to shut down on me . I can’t keep up with anything mentally forget peoples birthday etc . While going through this I dint socialise cause I don’t feel capable of taking things in . I get so depressed cause I feel pysically and mentally incapable . Once the flare or relapse starts to subside it takes me ages to get my self confidence back as I have been homebound for around 2 months with it . The fatigue during and even when the worst has subsided I’m still left with terrible fatigue . I don’t have a diagnoses and have had this illness since I had my child when I was 20 years old . I am now 34 years old and still get these relapses . Just wondered if anyone can relate to how I’m feeling ?

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Anonymous
3 years ago

I would guess that many of us that have lived with MS for many years can relate to the description of your experiences. See an MS specialist who btw will be experienced in similar diseases! He will order the necessary MRIs and tests to at least find out what it is not. Until that is done, it will remain a mystery and you may possibly needlessly suffer again. Don’t rely on 15 year old tests or opinions if that is the case. There is probably no disease that has seen more progress in diagnosis and treatment than MS in the last 15 years. Let us know what he says. I wish you the very best!


angelbum
3 years ago

Thanks for your help . Can someone tell me if the time I’m experiencing these relapses 6-8 weeks would or could be perhaps relapsing remitting ? Can anyone tell me there experience with there relapsing remitting . Please mother of two one boy age 16 girl age 2 live in aberdeen scotland . Thanks for any advice or help .


stumbler
3 years ago

Hi, @angelbum. Your symptoms do sound like MS, but unfortunately, these symptoms are present in many other conditions too.

But, it does sound like your symptoms over the last 14 years do need to be considered by a Neurologist.

So, make a list of all of the symptoms that you have experienced. Try and keep it short and concise. And in chronological order too. Then take it to your GP and suggest a neurological review – even demand one, just do it politely.

And keep the list of symptoms, so that you can pass it to the Neurologist.

You need to to know what’s going on, then you can consider treatment and management.

Good luck.


angelbum
3 years ago

Hi all

I appreciate any feedback . I have been too neurologists . My brain scans said I have lesions but they told me not in Ms pattern and couldn’t tell me what they were also I had lumbar puncture neg ! I wonder if there is anyone out there that has had these symptoms of ms relapse remit for years without a clear diagnoses ? What I do know is these flares make me very debilitated and we also know that steroids help I also find baclofen helps especially for the curling spasms in my hands wrists at night !

I would also like to hear of the pain part from any members on here .

Where is your pain ? I know some people with MS don’t get pain . My friend has primary progressive she doesn’t get pain but she now unable to walk etc her shaking tremor is very severe also .

Please get back to me anyone . It’s a lot to deal with . If you don’t have such a bad illness nobody with a healthy body can understand . When I’m going through a relapse
It always takes me by surprise as usually I’m feeling quite able then it hits me I feel so incapacitated with it .


angelbum
3 years ago

Oh I forgot to mention I had a clinic ally isolated event when I was 15 my vision went black white I was unable to talk properly I walking into doors walls etc back then they told me a migraine ????


stumbler
3 years ago

@angelbum , most of our first episodes were put down to some form of Clinically Isolated Syndrome (CIS). It needs a second or succeeding episode to become multiple, as in Multiple Sclerosis.

But, you do seem to be overdue for answers. They shouldn’t run tests on you, say they’re all negative and then give up.

If you have a good relationship with your GP, you could have a chat with them about how best to progress this, e.g. whether you need to be referred to a more specialist Neuro, etc.,…….


angelbum
3 years ago

Do you have a clinically isolated event if so what happened to you ? U can private message me if you like any information or story of another is valuable to me . I know everyone has there own story to tell and most are all different to one another . The worst part for me is the not knowing and also if you don’t have a clear diagnoses which help groups can you join its a awful place to be . The best thing that happened to me though was although I don’t have a diagnoses I get put on steroids now . In my 20s though I just had flares relapses with no medication and they lasted longer I prob was in my bed for 3 months at a time !


angelbum
3 years ago

If it is relapsing unremitting I have after 15 years could it still follow more or less the same pattern of relapses or should I be worse now ? Or get worse over the years . Or can it be that way for years and years ?


stumbler
3 years ago

@angelbum , my journey started back in 1985 with a case of Transverse Myelitis. Well, that was my Clinically Isolated event. It wasn’t until the late 90s that I had another episode, which lead to a formal MS diagnosis in ’97.

Now steroids can be prescribed to address relapses, but they are prescribed at very high dosages over 3-5 days. When I say high Dosage, I’m talking about 500m-1gm! These are normally only prescribed by a Neuro. A GP wouldn’t go that high.

Being undiagnosed is never a good place. You just don’t know where you’re going or how to plan. Calling it limboland is quite appropriate, but doesn’t make it any easier.

You really need to push your GP, as your Primary Care Provider, to get the answers you need.

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