I think I might be going bonkers!

New diagnosis and before diagnosis
1

Hi all,

I really don’t know where to start and I’m guessing thats how a few of these posts start.

Around about this time last year I became very poorly on a train journey with severe pain inbetween my shoulder blades and ribs and to be honest I thought I was having a heart attack. Follow ups from the GP immediatly after getting off the train showed that there was no cardiac problems. However a catalogue of ill feelings started and to be honest haven’t really gone away. They go quiet but in a weird way I can feel them there under the surface as if to say waiting for them to flare up which they do from time to time.

The syptoms I experience are:

Involuntary and quite agressive Twitching legs and arms (almost fit like. Epilepsy has been ruled out)

Cramp and spasms in toes, feet, legs, torso,

Feeling of trickling cold running water under the skin,

Bladder irritability (feels like I have a urine inf without the burning sensation)

Blurred/slow vision in left eye which can cause me to be a bit wobbly sometimes

Left eye twitching

Aching teeth especially on the left

Herendous rib pain

Extremly lethargic

I feel so heavy

Joints ache

Confusion and a difficulty in processing what people are saying to me

It has been a while since I felt all of these at once…prob about Jan time now…but…

Within the last 24 hours I’ve been suffering with a painful neck which hurts when it is bowed A LOT!

Lost control of bowel function (embarrased to say)

a numb type of pain in my left side of my face but it felt as though my face had dropped but I wasnt near a mirror to check and it only lasted about 10 seconds. I feel heavy, achy, lethargic, and pretty low in my mood (I have got quite a lot going on personally with friends serious illnesses so thats hardly suprising)

Anyway…

I’ve had a MRI last August which showed several foci but no evidence of de-mielination (excuse the spelling). I was then refered to a neuro that thought I may have epilepsy??? Basically he didn’t listen to a word I said and wanted to fit me into a box that quite frankly I was never going to fit into. I was refered to a Epilepsy expert that catagorially said that there was no evidence for epilepsy and he couldn’t really understand why I had been refered to him. Luckily he was a lovely Dr and has agreed to see me as a Neuro patient under the QE birmingham. He has ordered a lumbar puncture test for me which I have just been chasing up the appointement and…well…no where to be seen. Hopefully they will get back to me on Monday regards that now!

I don’t really know what I’m asking on here…I guess I want to know if my concerns are valid? Is it possible that I have MS even though the MRI suggested otherwise? Is there anything I can be doing for myself?

I feel like I’m loosing my mind. In a really weird way I question all of my symptoms and try to rationalise them or sometimes/a lot of the time I just question whether they happen at all. This vagueness and doubting is horrid!

I hate moaning and waffling with a vengeance, but this is how desperate I am!

Help me out of this limbo…please!

If you’ve read to the end of this post…congratulations…many of my family would have stopped reading after the 3rd line LOL

Mandymoo

I really feel like I’m going bonkers!

2

Hello, and welcome

A neuro who didn’t listen? Well, that’s a rarity… NOT!

Very pleased the second one was a good 'un though

As far as your questions go, my own belief is that lesions (“foci”) are NOT normal, even if they aren’t typical of any particular disorder. So, something is going on - you aren’t imagining things. Could it be MS? Yes, it could: MRI is not perfect, plus some MSers have atypical MRI scans, but until all the relevant tests have been done (like the LP) there’s no way to know for sure what’s going on and MS is just one of a long list of possibilities (including some that are fixable). Unfortunately, working out what’s going on is not always easy, so you need to be prepared for a bit of a long haul.

Can you do anything for yourself? There’s no magic solution, but lots of rest, avoiding stress, eating healthily, exercising when you can and not overdoing it may help.

I hope you get the appointment through soon and that everything goes smoothly.

Hang in there!

Karen x

3

Hey Mandymoo -no not going bonkers. You have so much going on. I can’t really offer a medical opinion. But I do suffer from some of your symptoms- bladder and bowel problems and spasm. Karen has given you some great advice. I will add that I have learnt you sometimes have to fight and sometimes shout for what you want and for people to listen. Good luck and take good care of yourself Min xx

4

Once again a lovely reply.

It’s lovely to be able to talk to people that aren’t going to judge me.

My husband and daughter are great but I hate seeing there sad faces when I’m having a bad day.

They look so desperate to help but can’t do much other than offer there lovely cuddels.

The one way I described my symptoms when I was having a really bad episode was “it feels as though my body is shutting down”. Does this ring any bells with anyone else?

Mandymoo

5

Just to say hello Mandymoo and welcome to Bonkersland! I’m with you there!!! xxxjenxxx

6

I know it’s pathetic but no diagnosis…or…a doc saying “we cant find anything wrong with you” is my worst nightmare! I’ve had a life time of battles for diagnosis’ and it’s exhausting! But most of all…I hate it when i’m not believed!

Sounds selfish…especially considering i’ve got so many close friends battling serious illnesses…but I need some answers…then I can deal with it, what ever it is!!

Thank you all!!!

Mandymoo x

7

Hi Mandymoo

Good to have you on the site. Yes, your phrase “it feels as if my body is shutting down” certainly rings bells with me!

Actually I used those very words to a friend recently. I was having a bad day with leg pain, major fatigue, and feeling so cold and unwell. That’s just the phrase I used.

Yes, having been in Limbo for a while now, I really feel it’s one of the worst places to be. We have no answers - no ‘pegs’ to hang our questions on; often no help with anything either. Other than the medication for Neuropathic pain that my Neuro prescribed, there has been no other help.

This site is an absolute gem - everyone is so kind and understanding. Many times I’ve posted on here with a question, or just feeling ‘low’ and always there is kind, supportive help.

I do hope you will stay with us - we’re all in this together.

Take care,

Bren x

8

I just want to cry!!!

Lay in bed, hurting etc etc etc

My ribs and between shoulder blades are so painful. legs twitching, eye twitching, teeth ache, bladder is driving me bonkers, tearful.

And just to top it off…the neuro secretary said that my notes are lost and the neuro consultant has no recollection of our meeting and therefore has not ordered a lumbar puncture!

i really do give up

Mandymoo

should be misserable mandymoo

xx

9

Just to say I am hoping you feel a little better tomo Mandymoo. It is quite unbelieveable that your notes have been lost… maybe they are in the same place as my memory :smiley: take care of yourself xx

10

Morning Mandymoo xx I so feel for you x wish there was somthing I could do to help xx

11

Morning Mandymoo

hope you are feeling better. I’ve been feeling like you rather over the last 1-2 weeks myself. Literally just the day before everything resurfaced I said to my partner I’m feeling pretty good - maybe it will all just go away and then bam (I think I over did it).

Try and listen to your body - I’m someone who hates sitting in one place, resting and not being productive but this week I’ve literally collapsed as I’ve got home from work and not done anything.

Its positive you are getting that LP - delayed though the appointment is. I really hope you hear back soon.

Reemz

X

12

I cant tell you how much it means to me to have all of your support.

I only got up an hour ago and then had a shower and im utterly exhausted! I got out of the chair to make a drink and i was out of breath…I’m so fearful that its ALL coming back what ever it is.

The most awful jerks happened when I was bad last time…and this really disturbed my daughter who is 16 and sitting her GCSE’s as well as trying to deal with her own recent diagnosis of PTSD from 7 years ago when her dad had a heart attack and nearly died. Oh god i think ive said that before! please excuse the waffling.

I have now posted the same post on the lupus site and trying to get support from them. I have the rash on both cheeks and over the bridge of my nose so I dont want to rule that out. A

aM I MAKING ANY SENSE?

Bprobebly repeatinhg myselkf alot.sorry. need to go now allpooped out

Mandymoo x

13

After loosing my rag several times and threatening action when the neuro secretary said that I would need to come in for another asseccment due to them loosing the notes I have finally got a date for my LP. 15th June, pretty worried and have made real efforts into loosing weight so that it will be less stressful on my body…1 stonne in 5 weeks…woohoo!

I’m actually having a lot of symptoms at the moment, flared up by the heat and a horrible cold plus a bit of stress thrown in for good measure.

Just a quich question, I’m having exasberated symptoms at the moment due to heat, stress and a horrid cold. If I should still feel poo when the appointement comes round, is it still wise to have a LP done at that time?

Thank you lovely people

Mandymoo x