Back again and in Limbo yet again

Feeling so frustrated! Not really sure if what I have is MS but know it’s something and felt I needed to write my frustrations out and know that a lot of you have been here so felt as good a place as any.

I had symptoms from last December which started as just eyelid twitching and constant ear pain. I’m not going to bore you with the ins and outs as there where lots of symptoms physical and cognitive that would come and go so I was in and out of the DRs etc.

at the beginning of the summer I got dramatically worse and resulted in speech issues, vertigo, muscular spasms and shortness of breath so was referred to neurology reluctantly as my dr still felt it was all in my head! Unfortunately as the dr was reluctant this vibe was passed on through the referral so instead of seeing the consultant I saw a specialist under the consultant!

She did however send me for an MRI of just my head (without contrast) which did come back normal and signed me off. My dr (different dr than the original) was not to happy about this as by now my mobility was affected and so we decided to get a second opinion to be of the safe side. We went private with this as we were fed up with the NHS and I wanted to choose the neurologist this time to get the ball rolling switching back to NHS if needs be.

At the same time she referred me to the chronic fatigue clinic as felt that that was a possibility.

so the neurologist wanted further tests an EMG and ECG and to see me again after. I had the EMG and was told I would get results within a fortnight. The EMG caused lots of muscular issues and I took a while to recover. In the meantime I had the cfs appointment. I was diagnosed with Fybromyagia and M.E and they said they were pretty sure and that i fit the box. I hadn’t heard back from the EMG at this point so assumed that was ok and felt completely relieved that the merry go round was over. I had a diagnosis and I could start to work on ways I could manage and ultimately improve my condition even started going to the cfs seminars.

So what a shock I had the week before xmas when I was told by neuro that I defiantly don’t have fybro/ME but actually gave a rare muscular disorder!

No idea what it is, didn’t ask many questions as I was in shock and was expecting him to sign me off.

I’ve been to dr google and MND and Muscular Dysprothy has gone around my head but I can’t help thinking it might still be MS that didn’t show on the MRI, when I had the MRI I was having a fairly ok patch plus it was without contrast.

My next action is , more bloods (had stupid amount of blood but this time it’s genetics), muscle biopsy - not looking forward to this has anyone had one?, further MRIs but to include chest and arms/legs. And been booked into MS centre to help with my breathing.

Feeling really scared I’ve gone from hoping it’s not ms to almost hoping it is. I know that might sounds terrible but now I know it’s something I just want it to be a something that’s not going to kill me :frowning:

I’m having a bad patch and silly things I used to take for granted I’m finding really hard to the point we are now talking about mobility aids which is a really hard thing to even think about.

I used to be so active, I have two children as well as a dog. We are a very outdoor family so to not be able to get about is really hard.

I just gate being in limbo, just want answers!

Here we go again. Why do these neurologists say these things to patients…I dont get it. What they should do is say tests have come back positive for other diseases other than ME/Fibro, and we need to investigate further.

Until they know what they are dealing with they shouldnt worry the patient.

So now you are worried.

Easy for me to say, but just keep living day to day and worry about it all when you know what it is. It could be something or something simple…a lot of the genetic muscular diseases show in child hood.

Keep positive you will know soon enough. Big hugs. xxxxxxxxxxxx

Thank you Goldengirl63. This is what I told myself when I came out of the meeting and keep repeating to myself. But anxiety still has a way of creeping in. I think it’s hard when you have pain that is a constant reminder and then your mind plays tricks like ‘that hurt, that can’t be right. I wonder what it means!’ Etc. when i thought it was ME/fybro and I got pain, I was saying to myself it’s nothing ignore it, don’t let it get to you. So this does feel like a huge step backwards.

I asked the neuro what his hunch was and he had no intention of telling me other than ‘rare muscular disorder’, how I should have worded it is ‘what are we ruling out next?’ But you don’t think when it’s sprung on you, then google takes over to fill in the gaps which isn’t the best!

i think I would rather he was honest, it causes more anxiety trying to fill in those blanks.

Hi hun, yes he has totally left you in an anxious state, they are pretty good at doing that. He didnt have to say much really just that they wanted to do some more testing. If they are looking at genetic, then from what i have read (I did read up about it a few years ago when a colleague was told similar) and a lot of genetic diseases present themselves at birth or at least you get some idea.

Google is ok, but can scare the beejebers out of us lol…

Anyone would feel the same as you hun, its simply not fair to dump you like that.

I hope you get your tests quickly.

My friend had Myopathy through Lymes disease she didnt even know she had…

Sending you big hugs.x

I’m pretty sure they tested for lymes when they did all the autoimmune and lupas stuff but I’m going to ask about it again as we do have a dog that has had ticks in the past. I’ve never noticed any bite/bulls eye areas but it’s worth double checking that it’s been ruled out.

The thing is when I was a child/baby I was very poorly and I havnt been great over the years on and off. They used to think I was bipolar as I would get periods that where like the flu where all my muscles ached and would get down. I was never diagnosed with it but was told it was possible, but being off medication and depression free for years now (still get the tired ness but cope with it better :slight_smile: ) I’m pretty sure I’m not. That’s why having the ME/Fybro thing seemed to fit. I told my self I must of had ME on and off for years and a year ago the fybro had joined the club and caused my issues.

So that’s why the genetic thing does worry me as there is adult onset forms. I have slightly odd shaped spine, the inward feet that makes people laugh when I used to run at school, breathing issues and silly amount of ear problems as a baby/young child. Think the sooner I get it ruled out the better really.

Think i come in the internet looking for answers but the only person that can do that is my neuro.

​just good to be able to vent it somewhere so I don’t go crazy!

If it is genetics then someone else in your family/tree will have had it.

I have LYmes co infection Erichilosis and never had a bulls eye rash, they think i got bitten in Brazil when i went blind for a few minutes…ticks can bite you never see them. When my daughter was in Sweden they were very careful when out taking her husbands brothers dog for a walk. One afternoon when they got home from a walk, she was in the shower and her husband said whats that on your back there was a huge fat tick…as soon as she got home she went on antibiotics as sweden is rife with ticks and lymes.

Lymes has many faces.

Ah well its all a quessing game isnt it, better to get the tests and see what comes of it all. It would be interesting in the meantime if you can find out if anyone in your family had something odd. In my family we had nueropathy, parkinsons, Lupus…xxxx