New and yet to be diagnosed

New diagnosis and before diagnosis
1

Today I’ve been referred finally to a neurologist, unfortunately there’s an 18 week waiting list. Which I’m finding hard to swallow.

im copying and pasting something I posted on another ms forum last night. I’m really looking for support. I need to try and get through the next 18 weeks. I’ve been unwell for a long time and it’s driving me mad. I even asked my GP to admit me today that’s how desperate I am

I was misdiagnosed with fibromyalgia nearly 4 years ago. But it’s now come to light that I may have either a type of muscular dystrophy or muscle myopathy. Dr at genetics has done a blood test for the dystrophin gene. But ms has never ever been ruled out. I spoke to my GP last week who has agreed to speak to a neurologist to see if they will give me an MRI.
I’m going back to my GP tomorrow because I don’t think she quite grapes how bad my symptoms are so I’ve written a list of them.
Here they are
Pain - especially in leg
Muscle spasms
Muscle cramps
Numbness in lots of places but particularly behind my ear (right side)also numbness and tingling on the right side of my face
Stumbling and poor blanace
Eye pain, last year my vision went very hazy and one eye felt like it has a film over it, optician found nothing and it went away after 3 days
Hand closes if I’ve been gripping something and I have I pull my fingers apart
Need to urinate but it can take up to 15 minutes before I actual pee
Dizziness and lightheaded
Felling of swell unused my chin
Forgetting words and sentences (I even stop mid sentence while talking to my partner) and forgot what I’m talking about
Losing simple words like table
I often have a blank expression
Chin twitches, I also twitch a lot in my sleep
I have low seizure threshold
Numb toes
I wake up with a burning leg inside but it’s not hot to touch
Weakness in arms and legs
Heaviness in my body like I’m trusgy through snow
0
poor mobility
Have often felt like my face is dropping but it’s not
Palpitations and missed beats. Waiting for results of echocardiogram
Getting a 24 he ECG in May
Sometimes I feel like I’m outside of my body
And I’m very aware of my legs carrying me
Have had to crawl around or flat because I’m not stable enough in my feet
Extreme fatigue, I have a nearly 5 year old but if my partner is at home I nap at least 3 times a day but then struggle to sleep at night
Eye twitching
Tingling and slight loss of right side of body

There’s a couple more. But my eyes are closing.
Maybe if I take this bits of paper into my GP tomorrow she will see the extent of how bad things area
.
I know I need an MRI. I’ve had a funny turn tonight and want to be admitted to hospital But I’m not sure that will happen.
I’m fed up now and need to know what is going on

I wondering if others have similar symptoms and have you been diagnosed

Sorry about typos. Struggling to type
Thanks in advance helen

2

Hi Helen,

I’m going to be no use to you, as I haven’t been diagnosed. I’ve had some of the symptoms you’ve mentioned - fatigue, numbness, tingling, cognitive issues, twitching, ‘heavy’ face, ice-cold sensations (rather than burning) - but I know that there are hundreds of conditions with the same symptoms, so just because two people have the same symptoms doesn’t mean they have the same diagnosis.

You sound like you are going through hell just now, so stay strong. Hope you get through to your GP that you need help now, not in 18 weeks. Sending you lots of hugs.

Paula

3

Thanks for your reply.

I called neurology this morning. And found out the waiting time is actually 12 weeks not 18!!

so I feel slightly calmer about that!

I hope you get some answers soon too

helen

4

hi helen

try calling neurology and ask the receptionist if they have any cancellations.

if they let you know whenever there is a cancellation, you will have a good chance of being seen a lot sooner.

good luck

carole x

5

thanks Carole,

thats was the reason I called. But the said if there’s a cancellation it goes straight to the next person on the waiting list unfortunately

x

6

Thanks for your reply.

I called neurology this morning. And found out the waiting time is actually 12 weeks not 18!!

so I feel slightly calmer about that!

I hope you get some answers soon too

helen

7

Oh luv! You are having a rough do. I think the only way to get admitted, is to go via A & E.

I do think your GP needs to know how much you are suffering. But a neuro would be more able to interpret your symptoms and subsequent tests.

There was a 10 month to see a neuro when I first began with problems, back in 1999. I pid £200 and went private and saw a neuro within 2 weeks.

After that I went onto NHS, but it got me seen earlier.

pollx

8

Wow 10 months, that’s awful!!!

I’ve actually ended up being admitted to the psychiatric hospital. I was admitted on Tuesday night. It’s been building up for a while. I haven’t been under psychiatric care for 6 years, and my last admission to the ward was just over 6 years ago.

I think with being in limbo and then added pressure and stress that started last November it has all just became too much. So I had to reach out for help and I’m glad I did. It will be a short admission but it’s been a positive one so far.

we have some lovely things to look forward to soon, my daughter turns 5 on the 20th of May and then we go away to Majorca on the 25th of June we’re going back to Majorca again for a week. We went to the same hotel last year and it was fantastic.

thanks for replying, I hate being in limbo

9

I am sorry you are having such a horrid time and hope that you are on the mend very soon. Sometimes life is just about dealing steadily with one problem at a time, keeping on keeping on and looking forward to better days ahead - this sounds like one of those. Here’s to better days soon.

Alison

10

Hi all,

ive had tingling in both feet and numb hands on and

off since October. I also have extreme fatigue.

The numbness affects my sleep pattern. As probably important to

memtion I was 3 months postpartum when all this happened.

Could it be Ms? My doc has referred me to neurology.

On the positive side my doc said my neuro exam was completely normal.

I am not sensitive to high temperatures.

These symptoms all started in October if it was Ms

wouldn’t they have progressed?

in aug 2014 I had right sided pain and loose stools which didn’t resolve for months with no

medical cause found? Related to ms? Would really appreciate any feedback?

11

Hi folks,

just thought I would pop in. I am STILL waiting to see neurology regarding my symptoms. I called a few weeks ago and was told I should have an appointment by mid August!!! I’m also waiting to see another neurologist who specialises in muscle diseases. Because there is still no answers as to why the creative kinase levels in my blood are high but aren’t coming down.

So very fed up now :/(

12

I’ve also had new symptoms recently. Lost all feeling in my pinky for two days. About 4 weeks I was falling asleep randomly about 7pm while eating dinner with my partner and going straight into a dream. I was speaking to her at the time but she said I was making no sense. This lasted a week, I eventually went to bed once night and recorded myself with my phone. You can see me talking and my speech is slurred just a bit like I’m very fatigued. And then I fall asleep, go straight into a dream and make no sense at all. Then I come to again. And I explain the dream and then go to sleep.

The weekend before that I had horrendous pain all down my left arm, in my upper back just the left side and it was going round to my chest. I eventually saw a dr at out of hours who said something about a junction at my neck that was pressing on my spinal cord. She said herself the sooner I saw neurology and had an MRI the better.

Ive certainly been able to calm down a bit and not drive myself as crazy, but now that the waiting is getting longer I can feel myself getting more uptight and just desperate to be seen. I had to move from indefinite DLA (nothing indefinite about it) to PIP and although I haven’t received my decision letter yet I called them the day after my assessment to ask for the assessors report and she has scored me enhanced on both daily living and mobility. So I feel less stressed about that.

I think I’ll give Neurology a call tomorrow and see what’s happening. I just need to know, or at least start to find out what’s going on.

my old powerchair broke which I need especially to take my daughter to school so I’ve hired one and once my PIP is through I’ll go through the motability scheme. My partner drives but works full time. So using the chair locally is a god send.

anyway I think that’s my news

hopefully I won’t be waiting too much longer.

Thanks for reading if you if you managed to read it all

13

Hi again folks,

sorry I haven’t had any more replies to this post or my other one. I just wanted to updated that a letter is on its way from Neurology. So instead of seeing the two separate Drs I’ll be seeing the one genetics passed my case on to. He specialises in muscle disease. So I’m guessing he will investigate the high ck levels as well as all the other symptoms.

a little bit annoying as the secretary has said once I receive the letter I will have to call to arrange the appointment with him. And it will probably be in October. So it’s great that I’m on the right track, and I know OCTOBER isn’t that far away. But like I’ve said earlier it’s been such a long wait. And I doubt that my initial appointment will give any firm diagnosis. So it may be another long road.

anyway, I’ll sign off now and try to get time sleep :slight_smile:

14

hi helena

this waiting seems to go on for ever.

hope you finally get answers

carole x

15

Hello everyone sending gentle hugs to you all.

I am waiting for an appointment with a Neurologist in Birmingham. I have been diagnosed with Fibromyalgia for over 7 years but recently my symptoms have changed and I have been referred and I wondered if anyone can tell me if they have similar symptoms? I realise that not everyone has the same symptoms at the same time and also Fibro symptoms are very similar to MS. my symptoms are:

Hot all the time - unable to regulate my body temperature

Pain - legs all the time, arms, fingers, hands, head, buttocks, side of body

Pins and needles and numbness - in my right foot, on the sole close to my heel, in my hands, fingers and sometimes it goes up my arms. This is mainly concentrated in my left arm but does go to the right arm too

Tired - so very tired all the time. I could lie down and sleep and still wake up tired

Forgetful - I forget what I’m saying mid sentence, I can hold a pen for example but can’t say what it is even though I know ! I forget what I’m doing in between doing it which is embarrassing at work.

Unable to grip things - I can’t hold things tightly and often drop things

Clumsy - I seem to bump into things all the time, bump into people and just basically feel like an oaf

Everything I do makes me tired and in pain - I try so hard to carry on as ‘normal’ but I end up tired and in pain and utterly miserable

Sleep Problems - I wake up all through the night and never have a complete night of sleep

IBS - I go from not being able to go to then having to run to get there in time

Libido - I have lost interest in sex which is a real shame for my partner

Unable to type properly - I keep making typos and spelling things wrong

Unable to concentrate - I used to love reading in fact it was my greatest pleasure but I lose interest so quickly and there’s no enjoyment

Well that’s me, there’s more I’m sure but I can’t think at the moment. Thanks in advance for your help and advice.