Feeling really frustrated and down

New diagnosis and before diagnosis
1

I have had short bouts of dizziness, cognitive problems, profound fatigue and headaches regularly for about four years, but didn’t know what was causing them.

But from September I have been consistently ill with new symptoms on top of the dizziness etc. These are muscle weakness, tremors, strange sensations like someone walking over my grave, burning, and tingling. My body constantly feels overworked - like I’ve done too much in the gym - and I fluctuate between muscles which feel like lead or like jelly.

I got referred to a neurologist in November and finally had my first appointment today.

I had a series of neurological tests - reflexes, heel to toe walking, scraping sole of foot etc. All responses were normal.

Neurologist said MS seemed unlikely but booked me in for brain MRI and also took load more blood tests - some already done by GP but also others such as Lupus.

I asked how long it would be for MRI and he said 6-8 weeks. This seems so long! After being constantly ill since September I can’t bear the thought of waiting another two months.

Also, it sounds awful but I just wish that one test or another would show something abnormal so there is more to go on than just how I say I am feeling. Is it possible for the neurological tests to all be fine and yet still have MS?

Feeling very down today - just want to get some help and know what’s causing me to feel so poorly.

2

That sounds like me a year ago. I’ve ended up being diagnosed with FND by a first neuro, the second one preferred not to give me a label at all, a clear MRI (and bloods) and am just coming to the end of a group CFS/ME course. I also had a VEP test yesterday for possible ON. So…still in limboland but now armed with information on how to balance fatigue and various methods of reducing CFS symptoms - many of which overlap with MS. I know that the waiting for tests and results is hard. Ask for help to reduce symptoms in the meantime. I have been sobered by the length of time some people waited for a diagnosis (20 years in one case), and whilst I’m still waiting for an answer, I’ve learned ways to deal with most of my symptoms. Good luck!

3

Im so sorry you are feeling so down, I find myself in a similar situation and my emotions and mood is getting lower as each day passes.

I can fully relate to wishing something would come back abnormal just so you can almost prove that what you feel is real and have something to attribute everything to.

I hope you are ok x

4

Gosh i so agree about that, when my VEP test came back ABNORMAL i nearly shouted at neuro in delight lol…he chuckled too, then eventually over time we had lesions added…it can take time but i think people have to just persevere.

Lesions are magic…NOW YOU SEE THEM… NOW YOU DONT…they can hide and move about.

5

Dont feel down. If it is MS it will eventually show itself…

I look at it this way. Before the advent of hardware and technology how did they actually diagnose MS?

I have several friends diagnosed back in the seventies when you think the first MRI was not performed until 1981, and non of them have had since MRI etc but their disease is still there…they were diagnosed through clinical findings and nuero exams etc and eliminating any other cause.

I know people diagnosed with MRI with no lesions on spine, but VEP tests positive and lumbur, but others with very little evidence.

It is a process of elimination to start with as MS mimics so many other diseases…

I even had positive blood test for LUPUS hurrah i thought i have Lupus (my dad had it), only to be told that isnt positive until i have another test six weeks later, and yes you guessed it, it was negative lol…however, reading my dads notes he was diagnosed with Lupus years ago with NO positive blood tests…

Usually if your neuro exam is normal you dont even get an MRI…i know several people never given that options.

It is a waiting game. As a neuro said to me once, it isnt life threatening lol…thats what he said…

So if it is MS it will present itself one day maybe not even for another few years. I learnt not to get excited about havign an MRI as it took 3 before the pefect lesion showed itself…other stuff on MRIs were dismissed as my age.

Even with positive VEPS and positive neuro exams it took quite a few years…

2 months will fly by believe me…

I know you feel down and it is frustrating, but i know people who have been waiting over TEN years actually onen of my friends took her NINE years…but she is diagnosed with MS now, and like she said to me it makes no difference to her, as nothing changed she just got a label to stick on her T shirt lol.

Sending you hugs. Just go and enjoy your life the best way you can. The more you stress the worse it gets.

xxx

6

Goldengirl is right

I’m another Limbolander the waiting game is so hard, i’m a wheelchair user have been since May 2013 when after suffering weird symptoms for a few years i collapsed and couldn’t weight bear at all but still don’t have a definate answer just left with a functional Neurological disorder diagnosis, I’m a lot better than i was but can’t get about outside without a W/C.

its hard being positive when we feel so ill, and perhaps are grieving our old lives and yet don’t have the answers… recently i got very depressed I felt so terrible like i was stuck in a black hole, thankfully, Iv’e picked up again but for now iv’e had to put the fight down. My Neuro wasn’t great and because as yet they haven’t found anything iv’e been discharged and told Stress related, Yes i get stressed from time to time but not more than anyone else does For now iv’e decided just to concentrate on coping with the disability like Goldengirl says they will find out one day. Iv’e started doing a little bit of voluntary work and thats helping and i see a lovely lady for CBT on Wednesdays and she helps me, Pehaps in a couple of years I’ll be ready to take up the fight again and ask for a second opinion.

I hope that helps…There are more people like you going through similar things

Take care Michelle x