angelbum 08/03/15
Last reply 3 years ago
Really need advice or experience relapse

HI EVERYONE

Really need a little advice or if you have experience on understanding these relapses .

As I have said previously I’m currently undiagnosed my journey with this illness started back when I was a teenager .

My first symptom was a useless arm at age 13 only lasted hours .

Second attack speech vision balance walking was affected .

I ended up in ambulance taken to hospital and basically just left on a bed till I came out of whatever that was . I was turfed out hospital the day after . No mri no scans nothing and they told me prob a confusing migraine but also there was a question mark on this and my hospital notes said clinically isolated event .

Please remember this is going back 20 years as I’m now 35 years old . Back then even now there is little Dr with experience of ms in chdhood .

Then after that from around 15 to 21 I still took attacks which would last about one day . I would not be able to talk or walk I also had extreme pain in my face with a lot of tinginling numbness etc looking back I wonder why I was alone in a room experiencing these terrible attacks by myself .

I could not call anyone as my speech was so affected I could not see I could not walk .

From the age around 21 just after I had my first child at 20 years old . I stopped getting these attacks as mentioned above and then started to get flares relapses that lasted around 6-8 weeks the symptoms I experience with third is stiffness which I think is spacity eye pain conginitve problems extreme fatigue and a lot of pain .

These flares relapses have been more or less the same for the last 15 years and each time it takes me so long to the bounce back.

My latest relapse started 31st December 2014 and we are now into March and I’m still fighting the fatigue and pain .

Obviously no where near the intensity while going though the relapse .

My walking feels like it has been affected since the last one just slightly feel like my left leg isn’t quick enough . Don’t know how else to explain.
I’m going back to the doctor again as I feel I cannot go undiagnosed any longer and have to go through these relapses attacks each year on my own . They scare me to death . I can’t function the same .

I’m seriously feel like going to a solicitor or taking g the nhs to court for my lack of diagnoses .

What I would like to know is can anybody relate to these symptoms ?

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angelbum
3 years ago

Do you think of how I explain my symptoms this could be ms I’m dealing with ?

Please guys or girls what’s your opinions on my story ?

I really don’t want to go through these relapses anymore on my own .


fi70
3 years ago

I would not want to hazard a guess as to what might be causing these symptoms but my heart goes out to you. I have a definite diagnosis and it still freaks me out when my MS flares up but I at least know the reason. I think you need to be strong and demand that further investigations are carried out and if your doctor continues to resist then you do have the right to complain. I am really shocked that with the symptoms you described and the frequency that you have not been referred to a neurologisy


fi70
3 years ago

Sorry for the typo I meant neurologist


angelbum
3 years ago

Hi I did get rendered 6 years ago and they didn’t seem to be interested ! I did have high signal lesions but they said not the pattern for ms but couldn’t tell me why I continue to get these relapses that fear the death out of me each time I get them .

They take me by surprise also because they only happen perhaps once a year . I have then recovered from the last one and trying to get on with my life the best I can . Then all of sudden out of nowhere I relapse and I’m basically homebound for a least 8 weeks !


angelbum
3 years ago

Referred I meant


angelbum
3 years ago

Thanks very much for your reply . I would like to hear from others . With the symptoms I describe does this seem like it may be ms ? I have been the checked out for all other things and they have been ruled out !


wilf
3 years ago

I don’t think any of us can give you the answer you want. I’m not a doctor, I just have ms.

When undiagnosed I was told to wait and see if I got another relapse. I think they can only get a clear picture of what is happening when you relapse, when the ms is active.


angelbum
3 years ago

I just want to know if what I’m experiencing could be ms do these symptoms seem to that of ms ?


fi70
3 years ago

I really feel for you, the symptoms you are experiencing are scary. Before I was formally diagnosed I spent a lot of time self diagnosing via the internet which is the worst thing you can do as they always report the worst case scenario which adds and feeds the existing health anxiety. I recently had a relapse and once again used the internet to diagnose symptoms which caused my anxiety levels to increase and you would not believe the symptoms that anxiety can cause.

As others have suggested you really need to talk with your doctor just don’t let them fob you off but probably prudent not to mention you think it is ms just list all your symptoms and tell them you need to get to the bottom of this as it is obviously having a very negative affect on your quality of life.

I don’t think anyone will provide a definitive answer to your question because in truth we just don’t know. MS has a wide range of symptoms and we all have different experiences but we are all happy to listen and where possible provide support. Take care x


stumbler
3 years ago

@angelbum , the problem is that the symptoms of MS can manifest themselves in a myriad of other conditions too.

This is where the problem lies for the medical experts, they have to eliminate other conditions, from a simple vitamin deficiency forwards.

It’s almost a case of eliminate the probables and then you’re left with the possibles.

Unfortunately, our bodies are complex, so the Doctors/Neuros have to go on what their tests tell them, what they see for themselves and what we can tell them.


cameron
3 years ago

Why not ask for a second opinion? That’s what I did. I went privately, which was expensive but I soon got on my (new) consultant’s NHS list. Sounds as though you could do with a different perspective.


angelbum
3 years ago

Thanks for all the advice . I really appreciate it . I have been tested tor everything over the years . I have had all bloods taken . Hiv hepatitis estin Barr what did show up was vit D Deficiency and another I would like to point out is CYTOMEGALOVIRUS was positive I had never heard of this virus and it took them 13 years to test me for this apparently it’s a member of the herpes family and 40 % of people can pick it up at anytime in there life . You should all look it up !

Has anyone of you been tested for this ? My feeling is this virus is brushed under the carpet or seems to be covered up and nobody talks much about for what reason. ????

As I said I had an mri I have not been seen by a neurologist during my attacks .considering my big neurological ones were when I was in my teens .I was left at home in a room on my own nobody there and wasn’t capable of calling anyone etc .

So basically everything has been ruled out but I continue to get the relapse each year .

Mum and I are going to Dr tomorrow to try and get a referral I can’t go on with the severity of these relapses on my own any longer .

Is it Ms basically clinical diagnoses ?


scarlettrw
3 years ago

I had problems for years before I was diagnosed. I Hope You Get Your answers. It can be so frustrating and scary. But I believe as stumbler said there are so many other things that can look like MS and not be. So don’t always jump to the worst. And if your relapses completely go away then just be thankful for that until you find something out.


angelbum
3 years ago

My relapses have never went away in all these years I experience at least one a year .

The only time I have been relapse free is when I was pregnant I seemed to be quite well 🙂

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