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Horrified!

Hi, i mentioned in my earlier post that i am seeing neurologist today to discuss the results of my brain scan, which i have had confirmed in a phone call and letter that there is something showing up. So i was fully expecting to go today and have the neuro confirm if this is or isn’t MS. However going back through other posts here, i can see that despite people’s very strong symptoms and even lesions showing on their scans, people are waiting for years sometimes without a diagnosis!!! This horrifies me, don’t get me wrong, I DON’T WANT to have MS but I do need a diagnosis of what ever it is and I need it quickly. Otherwise i could well lose my job which will be devastating financially and emotionally. How do people cope with the symptoms and disability day to day when not knowing what the cause is??? I can’t imagine going on like this with no treatment at all, i simply can’t work at the moment, the symptoms are much too severe, and i have recently been registered disabled. How do you guys who have been waiting for dx for a long time cope with all of this??? here was i niaivly thinking that when i see the neuro this evening i’m going to get answers, but i’n now beginning to think i am not going to be any further forward. i find that thought really depressing. Has anyone who has been newly diagnosed got their results fairly quickly or has everyone had to wait a very long time? Any advice/info/reassurance would be really helpful. Thanks x

Hi there,

I’m 6 and a half years in now without a diagnosis! I’ve also lost my job and just can’t function in the same way anymore.

It is tough, but you get through it because you have no choice but to. I’m still under investigation, (the neuros haven’t give up on me yet) and like you, I don’t WANT to have MS, but I do want a diagnosis! And if that is MS well so be it. At least then I know what I have and can fight it. Don’t get me wrong I fight it now, but just having a name for it seems to make all the difference. I’ll know what I’m fighting!

I find now, that I never go to a neuro appointment ‘expecting’ answers, that way I wont be disappointed when I get there! So any news is always a bonus.

Also, (even though I still very much want a diagnosis) after a diagnosis, things aren’t going to change. You’ll still have the same symptoms you had before your dx. So work on battling each symptom. I suffer terribly with fatigue so I rest a lot. I don’t make plans that involve lots of walking or if I do, then I do use a wheelchair. (it took me a long time to get my head around that, but once done, it opens all sorts of doors for you). I can’t hang washing on the line as my arms are too weak, so make other do it! Well there has to be perks to being ill!! Take advantage of them. Accept help when you can.

If you want to chat anytime, feel free to PM me

Jx

Thanks for your reply Jules, i’m so sorry you are still waiting for an answer after such a long time. I know a diagnosis of MS won’t change what is happening to me but i’m worried that without diagnosis I will have problems with sick leave from work and if necessary in future obtaining any kind of benefits if there isn’t actually a medical name for my illness. Through work I am lucky enough to have private health care which has meant I have had full spine MRI, brain MRI and nerve conduction tests all within 3 weeks, si i’m hoping that if it is an MS attack/relapse i’m having this will have been going on when had the MRIs so maybe more likely to show up on the MRI. I feel sorry for my family mostly, it’s aful for them to see me like this and I know they desperately want to know whats happening. Having collapsed at work a few weeks ago i would feel very embarressed returning saying they can’t find anything wrong with me. Well I guess its out of my hands now so will just have to wait and see. Thanks for your support. I’ll check in tomorrow and let you know how this evenings appointment went. take care, Trudy x

Hi, dont wish to horrify you but my first neuro symptoms were in 1990 with l’hermittes. After loads of tests I was told not MS but a side effect from the radiation treatment that I just had for cancer. It went away and roll on to 2005 numbness in left arm. scans were clear so I was discharged. Roll on 2008 lots os symtoms came on very quickly numbness weakness l’hermittes etc. Had scans and delayed radiation myelopathy was dx. in 2011. In 2012 saw another who suspected MS more likely. Had a LP which was negative more scans but didnt have enough criteria for an MS dx. I have been walking with a spastic right leg for 2 years now. Latest scan was last week!

Some people are lucky to get a dx quickly as being in limbo sucks!

Moyna x

Hi hun.

Some folk do get a diagnosis quite quickly. But if tests keep coming back with nothing unusual, the neuros are left with nothing to tell us.

It was like that for me. In fact i still dont have a proper diagnosis and I only really know what i dont have!

My dx is spastic paraparesis/cause unknown.

For years I was told it was probably PPMS, due to my rapidly progressing condition. Then for more years i was given a 95% dx of PPMS.

That lasted 7 years and i handled the situation the best I could.

But MS was discounted again and now they say I defo dont have it. My world was upended yet again and i felt lost!

So you ask how us folk in this limboland cope…we do, cos thats all we can do.

My GP kept writing debility on my sick notes. I know what you mean re telling work and needing more sick leave. I did claim DLA in 1999 and was successful, even without a firm dx.

You just have to hang in there, the best way you can love.

pollxx