What happens next

Welcome and introductions
1

Hi, I’m new here…. Not sure if I’m allowed here as waiting for diagnosis.

Start of the year I had pain and tingling in my legs, in March my left leg stopped working, been seen by orthopaedic consultant who has scanned everything and told me yesterday I need to see neurologist as could be MS. I’m already under a neurologist for Epilepsy but earliest I can be seen is end of October.
I’m at a loss. I now hurt in every joint in my body, I sleep about 2 hrs a night as pain keeps me awake even if I take pain killers or sleeping tablets. I’m losing the sight in one eye, can’t control my bladder, can’t walk unaided, lymph nodes swollen and drs know all this but say wait until neurologist see me. I live alone and at a complete loss at how I’m going to live. I have been off work for 5months already and pretty sure my job will be gone soon.

Sorry for the long rant I’m just so alone and need to cry into the void.

2

@BlueTeaLady hi there. It sounds a terrible place to find your in! Welcome to a good group - it is good you are here and, like all of us, RANT!
Are you involved with any services? Incontinence Service, Epilepsy Clinic, Physiotherapy you’re GP or their would refer you and although these symptoms might be associated symptoms - they are symptoms that are in need of management at anytime.
If you’re by yourself who are you managing the stress and other emotions you must be experiencing? Take care of yourself

3

Of course you’re allowed here! Everyone needs support, especially when they’re playing the waiting game.

Please contact your GP and ask for help NOW. Whether these are MS issues or not, there are treatments available for some of them, and you shouldn’t be left to suffer. Aside from that, see if he can recommend local agencies to provide assistance for you.

Please keep posting on here.

4

see now they shouldnt say ANYTHING they have no right to do that. Only a neurolgoist has the right to say it could be MS. I mean there is a lot missing.

For example you have to go through a work out with neurological tests. Mine was 30 minutes and i had a lot of deficents.

Neurological examination

Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and co-ordination, speech and reflexes.

These may show whether your nerves are damaged in a way that might suggest MS. MIGHT SUGGEST MS.

…
Joint pain, lymph nodes swollen do not suggest MS. My son in law has RA, and he often has bad flares, with lymph nodes swollen and terrible joint pain, he has bladder issues and cant walk far if he is flaring also has poor eye sight as well.

RA and MS, and Fibromyalgia and M.E. and Lupus, all have very similar symptoms, but joint pain in MS well i have never had joint pain with mine, nerve pain yes lol.

Joint pain can also be down to poor walking, and the way you stand etc. Not being able to sleep at night for instance can be a sign of fibromyalgia.

This is why it is crucial that anyone seeing someone should NEVER EVER put MS on the table unless they are a neurologist.

October is not that far away now. 2 months is about standard to wait.

In the meantime you need to organise some sort of time line of events, and also write down the most worrying symptoms. For example mine were:

Loss of sensation left foot and side and weakness. Eye sight blind in one eye twice, mobility deteriortating etc.

the neurologist do not one to see a great list of little things but the most important things.

I would be looking to see a reheumatologist as well. xx

5

Thank you for your replies.

GP has given me co-codenomal for the pain but that’s it. Other symptoms have been ignored. Optician has written to GP as well regarding the sight in my right eye and currently have glasses with a prism to help with double vision.

I apologise for posting here before being diagnosed. Just to clarify the orthopaedic consultant said it ‘could’ be MS. I forgot to mention that I recently went to St George’s hospital to have a brain scan on the T3 MRI which did show lesions on my brain which hadn’t showed up on standard MRI.

I’m regards to my symptoms, again I apologise I wasn’t following a set list as I thought MS was different for everyone I wasn’t trying to claim I have MS just said what is going on in my body.

I was hesitant about posting here as no services near me and not been diagnosed and I appreciate that there are other possibilities to my symptoms but doctors have ruled out most. But I will take into account what has been said.

Again my deepest apologies for ranting here it was the wrong place to do so.

I am sorry

6

I feel I need to take issue with you. A GP, an orthopaedic consultant or other medical professional can certainly say why they are suggesting that someone should see a neurologist. Yes, they can say because it may be MS. That is not the same as saying it is MS. That is actually far easier for many people to take on board and deal with emotionally than being referred to a neurologist with no explanation at all. The mind is likely to jump to even worse conditions, or be in a much greater sense of flux and uncertainty.

Give me honest, straightforward doctors anyday. Most of us are adults, and prefer being treated as adults.

7

thats fine NO ONE has the right to suggest it could be MS. we have seen so many times the aftermath of professionals doing so. COULD BE MS what right have they to say that?

MY GP faced with a barrage of neurological symptoms way back in 2006 said she was referring me to a neurologist as SHE wasnt happy with the examination and felt i needed further investigation. NOT ONCE did she say i think it COULD BE MS.

why have a neurolgoist. AN optician is there to check your eyes, they may stumble upon something which disturbs them, and what the protocol is in this country UK is to referr to neurology for further investigation. To be told you have MS in the UK you have to satisfy the McDonald criteria which is very strict.

USING THE WORD maybe, COULD be MIGHT be MS is inferring it they are thinking it is MS. you dont utter those words or you shouldnt if your a professional.

from specsavers own website.

Can you tell if you have MS from an eye exam?

Only a neurologist (a specialist in nerves and the nervous system) can make a diagnosis of multiple sclerosis. But many people will start their journey with an optician, as eye problems are a common first symptom.

There are certain things that can signal the early signs of MS during an eye test, and if an optician spots something unusual, they’ll refer you on to an ophthalmologist (eye specialist) for further tests and to rule out other causes. Then, if there is further cause for concern, the ophthalmologist would hand your over to a neurologist.2 So it’s important to have regular eye tests to keep an eye on any changes over time, but also to see your optician whenever you have any changes in your vision.

Its a protocol. I never once questioned why i was seeing a neurologist just grateful actually that someone was taking me seriously.

Even in 2006 with MS symptoms it took until 2016 to be OFFFICIALLY DIAGNOSED with MS.

My neurologist told me he was looking at possibly me having MS but things were not quite fitting together.

I beleive mentioned the dreading word is far worse then saying NOTHING. IMHO.

8

I think we’ll have to agree to disagree on this.

9

Dear BlueTeaLady

We may disagree at times, but we are still a strong and supportive group of friends.

You are welcome on here regardless of your status as a non-diagnosed concerned individual.

CC is correct that only a neurologist may diagnose MS. But a highly qualified doctor from another specialism may suggest what they suspect could be wrong. So long as you accept this as an ‘opinion’ as opposed to a diagnosis, then you’re being fair to yourself.

Regardless, we do our best to inform, understand and support all who are fearing a diagnosis of MS.

Sue

10

Why are you apologising? If there is a place where you can verbally vomit this is one of them. Are you feeling any calmer?

11

dont apologise you have a rant didnt know you were ranting lol.

I overeacted about the MS being mentioned. WHY? Because over the 15 to 20 years i have belonged to this group even after the second changes and name and loosing a lot of our regulars, I have seen the AFTERMATH of loosely and cavalier dropping of the word MS by other professionals other then a neurologist. I overeacted to protect you in my stupid ways.

You may have MS you may not and at least your are being investigated, BUT it is better for other professionals to keep their opinions to themselves point you in the right direction yes.

this is for PRE DIAGNOSIS. i was on here 16 years without a diagnosis.

I have seen the aftermath of loose words being banded about, where the recipient becomes so upset they can barely eat or drink thinking they have MS.

Its not upto you @BlueTeaLady to apologise but I. I am sorry to make you feel unwanted on here.

Perhaps its time i take a break.

Keep moving forward with your search for a diagnosis but always be open minded to other things.

Hugs CC.

12

CC

We can all write things that come across a bit differently to how we meant them. But you are honestly one of the kindest, most thoughtful and helpful of members of this forum.

Please don’t take a break from us, or if you feel you need to for your own peace of mind, please don’t stay away too long.

As I said before, we are all individuals, some of us pretty strong minded, we don’t always agree. But we do support each other.

You have given more time and energy than the majority of people to this site. You’ve been unselfish and caring in helping people with new diagnoses and the undiagnosed alike.

You are very much appreciated.

Sue

13

Sorry, I should have addressed this to @Crazy_Chick just to make sure you get it CC.

Sue