How did you cope while waiting for specialists?

[AITD_]

Hi,

 

Before I start. I haven't been diagnosed nor am I self diagnosing. I am simply reaching out to a group of people who may be able to relate  to some of my symptoms as im at a loss at the moment with how to manage my daily living until I see a neurologist.

Since Christmas my health has done a complete shift. 
What began as a visible face twitch shifted to horrendous vertigo, numbness and tingling in left arm and both legs, weakness, constant exhaustion, confusion, vision problems. I know all these symptoms dont look bad, but at the level its happening its been debilititaing. 

 

It lasted just over a month, then finally I felt some mental clarity was coming back. Until the weather got really hot, and then I had whole upper body shakes (including my head) and felt myself slipping into what I had experienced the previous month. THANKFULLY it seemed to improve once the weather cooled down again, however the tingling in my legs and left arm haven't left at all throughout this time. 

 

I was diagnosed with scoliosis when I was 21 after I was unable to use my legs for a period of about a fortnight, they mentioned it shouldn't have affected me the way it did but put it down to the diagnosis and gave me some voltaren. So over the years there has been a few times my legs wont work and I generally just need lots of rest for them to recover. 
But this time I feel so much worse.

I have:

Presented to ED when the vertigo and arm tingling started because I was worried I was having a stroke (They checked my haemoglobin levels and sent me home)

Seen an optometrist - who told me I have to see my GP asap as my eyes were healthy but not responding the way they should.

Seen a physio therapist, who thinks its completely unrelated to my scoliosis

Seen a secondary GP while mine was on holidays. Who sent me for a CT scan, blood work and gave me a referral for a neurologist and then my GP once he returned from holidays.

Blood work - clear

CT scan - clear

 

The Neuro app is in another 23 days and I am really struggling.

My GP gave me a script for Amitriptyline to try and get me through the numbness and tingling until my Neuro appointment - but its just not working.

Everyday im in pain, beyond any kind of exhausted I have ever been and I feel like im letting the team down at work because im some mentally watered down version of my usual self. 

 

I know its only 23 days and I sound like a sook but HOW did you cope?

Note: My GP has mentioned he believes it could be Multiple sclerosis (which is why I am here) 

 

[Stumbler]

Hi @AITD_ . You've done the right thing in reaching out here as your story will resonate with a fair few of us.

 

Is it MS? Well, it could be. Those symptoms do present in Multiple Sclerosis, but they also present in various other conditions too. The neurologist is best placed to start the process of eliminating the probables and then investigating the possibles. Unfortunately, neurologists seem to be very busy these days, hence the waiting time.

 

Try not to get too concerned about what others may be thinking. You do have a medical condition that needs identifying. Any kind of continuing worry and stress can only make the situation worse and is best avoided.

 

Amitriptyline is a good call by your GP as this can "dampen down" some of the neuropathic symptoms and help you sleep. Just don't take it later than 12 hours before you intend to get up the next day. This will hopefully avoid some of the "zombie effect" it can cause.

 

So, for the next 23 days, live healthily, eat healthily and try to keep your concerns under control. You can't do anything more than you're presently doing. Even pamper yourself as a reward for managing so far, whilst the medical profession are getting you to the right specialist.

 

Do keep us updated regarding what happens in three weeks time. It'll be here before you know it.

 

[AITD_]

@Stumbler  Thank you so much for the words of understanding and encouragement.

At the moment its very much a mental issue as it is physical so your outlook towards it has definitely helped on a "bad day" 

I love the idea of treating myself for coping thus far. I definitely had not looked at it from the accomplishment aspect, only the frustrated one.

 

Fingers crossed the Amitripyline start to help soon. Im very lucky I have a GP who is trying to help manage symptoms in the waiting period.

 

It has been mentioned this could be a "temporary neurological episode " due to a haemorrhage I had. So I am hoping that its something along those lines. Only time will tell, but I thank this community for relating with me. It definitely makes it less isolating.  

I have a better outlook today, yesterday was a bit of a weak spot so I really appreciate you taking the time to validate the difficulty.