Rant needed

New diagnosis and before diagnosis
1

Hi folks,

I just needed a rant, and I’m coming here because I know there are people in the same boat or who’ve been there. I’m in that pre-diagnosis limbo and I’m feeling incredibly frustrated right now. I just wish there was something I could do!

Story so far: My symptoms are weakness in one leg, occasionally buckling at random; painful spasms in various parts of the body; non-painful twitches in various parts of the body; extreme fatigue; facial pain; bladder problems. Tests: MRI showed lesions that are in an area suggestive for MS, but not definite; LP results were normal. Neuro was convinced she would be giving me a firm RRMS diagnosis until she saw the LP results, which surprised her. As it is, she’s not happy about giving me a diagnosis right now. I completely understand that, because if it’s something else that looks like MS she doesn’t want to give me the wrong medication, but I just feel so helpless.

The last couple of weeks have been really difficult with the fatigue, trying to explain to my colleagues just how I feel. People respond with “Yeah, I think everyone’s a bit tired at the moment” and I want to shout at them, even though it’s not their fault, but they just don’t understand the difference between being tired and having this level of fatigue. My managers know exactly what’s going on, but my other colleagues only know that I’ve had a lot of tests and I’m generally not very well. It’s so hard to tell people that I feel so worn out that I want to cry when my pupils leave, because I have so much paperwork to do and by that time I’ve run out of energy. I have a lovely class, and if I thought it was affecting the quality of my actual teaching I would stay off, but I’ve had so much time off with this that I am trying to keep going as much as possible. Without a diagnosis, I can’t give HR a good reason for why I’m off so much.

The pain and twitches at night mean I can’t sleep very well. I’m forever tossing and turning and feel like I’m going mad. I have quinine for spasms but it hasn’t been very effective lately. My neuro suggested I try gabapentin for the pain but I wasn’t ready to take a painkiller every day until now - I’m seeing my GP tomorrow so will ask to try it. I’m occasionally walking with a crutch to take the pressure off my leg, although that one always gets the question “What have you done?” and without a diagnosis I can’t even give people a quick answer!

I’m just incredibly frustrated. I won’t get a diagnosis or treatment unless something else happens and I get a new symptom, which I obviously don’t want. Rock, meet hard place! I had some horrible spasms in my ribs the other night that I’m pretty sure were a one-sided MS hug, but my GP said it’s just another spasm so isn’t significant as a new symptom.

I’m not really asking for any specific advice, I don’t think, I just felt the need for a rant in a space where other people would understand what I’m talking about! Thanks for reading if you made it this far!

2

Hello… I am sorry to read about your symptoms & the frustrations you are feeling. I just got diagnosed a few days ago and like you came on here as I knew it’s the place people will ACTUALLY understand. I understand your frustrations with work collegues - they can say some real insensitive stuff “I think we all get days like that” is a classic!!! Because THEY do not. I had one time I said no to walking to a shop 10 min away, and the girl (innocently enough just insensitive) said “oh you can’t be bothered, it’s ok I’ll go myself.” Later that day I calmly corrected her saying I WOULD have come, IF I could have. Then there’s the “oh your too young for that” or “oh your just thinking the worst it won’t be MS…” Since when were they medical professionals??? I really hope you get a diagnosis for whatever it is soon… The uncertainty and just having to suffer with no end in sight is hard… Take care Jacelyn xx

3

Hi my GP gave me gabapentin and they work really well im on 1200mg daily, its worth a try just to ease the pain for you so you get a good nights sleep. Take Care

4

Hello TwitchyTeacher, I’m loving these screen names

Is the neuro your seeing a specialist in MS? If not, maybe thats what you should be thinking about discussing with your gp.

I hope you get sorted with the right medication for your symptoms.

Take care,

5

Hi folks,

Thanks a lot for the responses, I really appreciate it. I took the decision last week to tell all of my colleagues what’s going on, and I feel much better for it. Whilst they can’t all understand what I’m going through, at least MS is something they’ve heard of and understand is serious.

My neuro is an MS specialist, yes. I was sent straight to her when my leg started buckling. I’d only been given physio referrals before that for my weak leg, and one GP suggested my fatigue was “just a phase”. I don’t see that GP any more, lol. My tests are inconclusive, and my symptoms have progressed since she made the decision about not diagnosing me, but I don’t have any new symptoms - just more pain and more spasms.

I started the gabapentin a week ago and they’re helping, though I’m still getting some pain. We’ll see how things go!

6

Hi TT,

I don’t really have anything to add, just wanted to say hi, and that I understand exactly what you are talking about regarding people not understanding - have you read the spoon theory of fatigue? It’s written by someone with Lupus but it holds up well for anyone with fatigue I think… But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness

Also I have twitches too - painless, like having one of those eye twitches we all get, but in various parts of the body…

7

HI TWITCHYTEACHER.

I DON’T REALLY HAVE ANY ADVICE OR PEARLS OF WISDOM TO OFFER BUT I JUST WANTED TO GIVE YOU MY SUPPORT FOR WHAT IT IS WORTH.

LIKE SO MANY OTHERS WHO USE THIS SITE, I’VE BEEN IN MS LIMBO. I UNDERSTAND HOW FRUSTRATING IT IS WHEN PEOPLE WRITE YOUR SYMPTOMS OFF AND TELL YOU THAT THERE IS NOTHING TO WORRY ABOUT. THEY TELL YOU THAT YOU’RE TOO YOUNG FOR IT TO BE ANYTHING SERIOUS AND THEY HAVE NO REAL WAY OF KNOWING ANYTHING ABOUT HOW YOU FEEL.

UNCERTAINTY IS A DREADFUL THING, PARTICULARLY WHEN IT CONCERNS ONES HEALTH.

I KEEP MY FINGERS CROSSED THAT YOU GET SOME ANSWERS VERY SOON AND IN THE MEANTIME, I SEND MY VERY BEST AND WARMEST WISHES TO YOU.

SARA.

8

Thanks to all posted here, and to you Twitchy Teacher. I was only in Limbo for a year (I consider this really lucky)… It’s awful, and for me, I didn’t even consider the past 3 years of fatigue was anything more than me getting lazy… Until I had my first symptom, MRI, second symptom, MRI, lumbar uncture…

I really hope that your doctor can get to the bottom it, coz even with a diagnosis, and something concrete, people still can’t fully appreciate it. Stay strong, and just keep swimming xxx

PS Loved the spoons!! x

9

Hi, I have a problem with right leg too which is increasing spasticity in right leg. I have to drag that leg about all the time. I have one lesion and a negative LP too so no dx. Was given B12 injections and as I feel so much better after each oneI think I must have subacute combined degeration of the cord secondary to pernicious aneamia. Have been in contact with PA society and folk there are getting B12 jabs daily for neurological problems associated with PA.

Moyna xxx

10

Hi, just offering my support and full understanding. I have had symptoms over 20yrs and only since eye problems 3yrs ago were they linked. I’m still undiagnosed and find explaining to friends,colleagues,health care professionals at times torturous and exhausting. I’m particularly symptomatic at the moment with eye issues,muscle weakness,ticks,dragging leg and inflammation in the heart.causing meds increase and associated side effects including insomnia.im so pleased I found this website and forum I don’t feel so alone and no need to add’ going mad ’ to my list of symptoms.

11

Hi twitchy and all new folks :slight_smile:

Just wanna say hello & welcome it took 14yrs of allsorts before i got a dx this year , i went to drs with eye pain just over a year now to be told i had conjunctivitis 4 days later my left eye went blind im on various meds & 8 codine every day my breakthrough came in the form of a ms nurse who ive seen once & is brilliant ive learnt alot about myself in 14yrs and other people i hope your sorted as well as can be soon & remember it don’t matter what others think or understand just be you.

regards sheep