Waiting on appointments

Hi everyone

I saw my GP on 30th May about symptoms I have been having. She did not comment or commit to what she thought I had but did send off a letter of referral as she said all the symptoms I have is neurological.

  • Balance - I look like I am drunk most of the time
  • Being forgetful - I was helping a friend out in a shop and couldn’t remember what half of £17.50 was or how to use the calculator to figure it out. This is just an example of numerous times.
  • Numb arms - most every night I wake up with my arms asleep and am not sleeping well cause they are asleep and hurt.
  • Numb lip - I woke up the end of May with my left bottom lip numb…like I had been to the dentist…this went away and later in the day the left side of my tongue had the same feeling…and then still later on the top of my tongue felt like I had been eating fizzy sweets or like electrical buzzing
  • Eyesight - My right eye sometimes aches and hurts. This is sometime accompanied with a focal point in my sight being kinda greyed out and I have a squiqqly bit that I can see as well and a black dot.
  • I am tired all the FREAKIN time. Sometimes I find it very hard to get up to get ready for work.
  • Sex - FORGET it!
  • Vagueness - feeling very detached from all and everything around me including people
  • Speech - When I talk or read aloud it gets all muddled up…I sound like I can’t string a sentence together. This isn’t all the time but I used to be able to read aloud without any mistakes.
  • Sometimes I find it difficult to hold things up like I have no strength.

Anyways I would like to think I am not crazy. I am seeing her again this afternoon as it’s been two months since my initial visit with her to start the process of finding out what’s wrong.

She had even put me on HRT patches as she was thinking this was all perimenapausal. I was on those for 6 months and have recently stopped them as my symptoms has not stopped.

All my blood work came back fine. I already have B-12 shots so this is not an issue.

Thanks for reading

If you saw an optician he might also consider making a referral.

Hello, and welcome to the site

Whether it’s MS or any one of a large number of alternatives causing your symptoms, you definitely should have had an appointment date through by now. If I were you, I would call the hospital where the referral went to and speak to someone in appointments: it could be that the letter went missing or something somewhere got screwed up. You could also call your GP’s surgery and ask to speak to whoever does referrals - they may be able to help you.

It can take ages to get an appointment, but there’s no good reason not to get a date at least!

Just seen that you’re seeing your GP today - hopefully she will chase it up for you.

I hope you hear soon.

Karen x

Well I went for my visit last week and are not any further along. The GP did say the audiologist I saw has referred me to a ENT for my balance issues. I asked if it was worth going private to get in to see someone quicker but she was not willing to say yes as I am seeing a eye specialist on the 15th who can refer me for a MRI, the waiting list to get a MRI done is currently at 8 weeks.

I said my balance and my fatigue are slowly getting worse and her attitude was there isn’t anything she can do about it as I don’t have a an illness she can treat. I just have to live with it until a diagnosis it made, if at ALL. She did up my nighttime anti depressant as I said I was’t sleeping well as I wake up and my arms are asleep and ache so I am not getting a good nights rest. I feel like I am walking through treacle everyday.

Also, I now feel like I have something stuck in my throat or that my larynx is enlarged…very annoying.

I went today to see the nurse as I realised my B-12 shot was due and she said that it must be the directive that I have to go through general medicine here on the Isle of Man to be then forwarded onto a specialist such as a neurologist.

I also rang the hospital today to speak to the secretary of the Dr I have been referred to but he is on holiday this month so I imagine I won’t get a call back for a time.

So the wait continues.

Thank you for the welcome as well.

Has your Gp done blood tests? Checked for Thyroid problems? Have you had any vision problems? If it is a while since you have had your eyes checked, it’s a good place to start, opticians can spot loads of things. Gp’s have a duty of care and should try and treat your symptons even if you don’t have a formal Dx. Good luck with it all

Hi Apple pad

Yes I have had all the things done you have mentioned. As soon as she sent off my referral letters we did my blood work up which turned out fine including my Thyroid…

I made and went to Spec Savers and had my eyes tested…ended up I needed new glasses…again…

I do have a problem with my right eye where I can be looking at something and the focal point goes all grey and shadowy but I can see around the focal point. I have always had squiggly lines in my eyes as well but now have noticed a black dot about the size of a petite poi pea. I can see this when I close my eyes and sometimes my right eye aches.

Sometimes when I close my eyes I can see light or movement what I can only describe is like watching a space movie and your moving thru a star field.

Thanks for commenting…

Hi Apple pad

Yes I have had all the things done you have mentioned. As soon as she sent off my referral letters we did my blood work up which turned out fine including my Thyroid…

I made and went to Spec Savers and had my eyes tested…ended up I needed new glasses…again…

I do have a problem with my right eye where I can be looking at something and the focal point goes all grey and shadowy but I can see around the focal point. I have always had squiggly lines in my eyes as well but now have noticed a black dot about the size of a petite poi pea. I can see this when I close my eyes and sometimes my right eye aches.

Sometimes when I close my eyes I can see light or movement what I can only describe is like watching a space movie and your moving thru a star field.

Thanks for commenting…

Hi everyone

Hope everyone is enjoying the sunshine?

Today is not a good day. I took yesterday off to spend time with hubby and had a good day. Went shopping and went for a motorbike ride (pillion for me) spent time with friends in the evening…I had a my B-12 shot on Tuesday and hubby was “oh you seem a lot better today”

Today I am shattered!!! My right eye is burning and aching along with having difficulties in seeing out of it blurried vision. I was 30mins late for work cause I just COULD NOT get out of bed and my right arm is aching and burning from the back of my neck across my shoulders and down into my arm…

I rang the hospital on Tuesday trying to see when I would get the appt for the main consultant and was told that even though my GP has sent a urgent referral the consultant has classed me as Cat 4 which means I will be seen 4 months from time of referral so I am looking at the 6th of October to be seen by this gentlemen. The young man said I could go back to the GP and ask for another letter to be sent but he doesn’t thinks it would speed up me getting an appointment.

Thankfully I am seeing the eye consultant next Wednesday and hopefully he will be able to help to do something?!

Hi everyone, I have all the symptoms…Blurred vision, numbness and pins and needles. Horrid headaches, forgetfulness, and lack of knowing what is going on around me!!! I have not worked for over 9mths, and I have also not drove my car since June…This is because I forgot how to drive!!! Very scary.

I had tests for Meniere’s Disease, audiologist said my left eye was working more than the right. My eyes are very misty and foggy!!!

My next appointment at the hospital is not until 9th October. I just want some answers, because the symptoms totally wear me out, and the affect has took its toll on my family, and husband.

Jan

hi i am new on here ,i have been having problems for about 8 years ,i saw a neuroligist when i started to get pins and needles in my arms and feet .i had some tests and they said i needed vit b12 injecs as i was low on that .i also was suffering with periphenal neuropathey, so i just excepted that was it ,over the following years i had some weird things going on like my arms got really weak i had problems with writing but it only lasted a couple of days,so i forgot all about it then .i ws having pains in my lower back and had problems with my right foot dropping and a little balancing, so i had a mri scan and they said i have a bulging disk l5 s1 and offerd me a epidural steriod inject in my spine for it, that made me feel better the foot drop got better and the balance did as well.arfter 3 months it got bad again i could not walk properly couldnt feel my feet .my balance was no good i had to have help walking,when i had a hot bath my legs would give way and i couldnt get out of the bath.i hated feeling clothes or bed clothes on my legs .i had a tight feeling around my waist.then i was sent to see another neuro who done a few test with a hammer on my reflexes ask me about anyone in the family who has ms ,my cousin has just been dx with it .so she orderd a mri of my brain and spine ,and said maybe i also have it .i am now still waiting for her to get back to me about the results of the scan that was 2 weeks ago ,i am still having trouble with my legs not doing what i want to them to do.i carnt drive anymore,and have been off work for 4 months now,i still wondering if im going mad or are these symptoms of ms . sorry about the spelling .

@ MeShell: I think it would be worth seeing your optician about your eye before next week - to check if you need to get urgent treatment. Better safe than sorry.

@ janetlousie & gina_g: You’ll get a better response if you start a new thread because a lot of people won’t spot your posts in amongst someone else’s. Just click on the “New Thread” green box. And welcome to the site :slight_smile:

Karen x

Hi again Inbtween today’s posting and now…I ended going to A&E as the pain and bluriness in my right eye was scaring the crap ou tof me…long story short…I ended seeing the eye specialist this afternoon that I was to see next week. He put three types of drops in my eye and had a good ole look around but came up with nada. Said I had a larger number than normal floaters in my eye but could not see any reason or cause for the ache in my eye. I don’t have any optic nerve damage. I am grateful there is nothing wrong with the eye just would like to know why I am getting the pain and bluriness. He isn’t referring me for a MRI either. Janet and Gina…so sorry you are having these problems…I hope you get some answers and relief soon…x

Thanks MeShell, Its shocking how we all have all these symptoms and we wait forever to find out what is wrong.

Hope everyone is fine, and we have each other to chat to .

Jan

I could be completely wrong here, but eye pain & blurred vision can happen with migraine. I don’t know a whole lot about it, but I do know that migraine can happen with or without headache, so if you aren’t having headaches, you may still be having migraine.

The neuro will know better than me obviously, but if your appointment isn’t for ages, perhaps your GP might have some ideas.

Kx

Hiya Meshell

You really do have alot going on and the tortoise speed of things happening to find a dx must be driving you nuts,but as for your …am I crazy in the initial post,if you are I must be too as it sounds like I have written it.

Your doc is wrong in saying he cant treat you though,he has a duty of care and should give you something for symptom relief.

My doc started me on amitriptyline for nerve pain and later on baclofen for leg stiffness both of these were long before my dx.

Take care

Pip