Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Annie11

Waiting to see neurologist.

51 posts in this topic Last Reply

Recommended Posts

Annie11

Hi I have had various health problems over the past 8 years. (Migraines, cluster and thunder clap headaches). last few years have hands cramping, tiredness, muscle pain, burning lower legs and few, severe feet and legs cramps, tightness in lower rib cage, feeling cold water running in ankles/legs, spot of vibrating in thigh. I thought I might have fibromyalgia. GP has now referred me to neurologist to 'rule out ms'. My sister and cousin both have ms. I am not afraid I just would like a diagnosis but know it can take years. Can anyone please advise if my symptoms are more fibro or ms? Thank you. 

Share this post


Link to post
Procrastinating
Stumbler

Hi @Annie11  and welcome.

 

The majority of your symptoms may indicate MS, but they are also symptomatic of various other conditions too. This is where the Neurologist specialises in trying to "see the wood for the trees".

 

Diagnosis of these conditions used to take years, but medical science has moved on, so I would hope that you wouldn't be waiting too long for a diagnosis. I can see that this is important to you, so that you can place a stake in the sand and move on.

 

It may help the Neuro if you could provide a list of your symptoms, with a timeline, if possible. There's some details about maintaining a symptom diary here :- https://www.mstrust.org.uk/a-z/diary-symptoms

 

Do keep us updated on your progress. We're always here to try and answer questions.

 

:moonieman:

 

 

 


Edited by Stumbler
  • Like 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Annie11

Hi John

 

Thank you for your reply. 

 

You are right that a diagnosis is so important so I can move on. I have felt like people think that I often have 'something wrong'. (Especially my employer). They now insist that I get a doctor's certificate if I'm off work even for one day. After 17 years there, I feel like they don't believe me when I can't make it into work.

 

I have arranged to see Neuro privately (in Feb) as the waiting list here is over 2 years. Do you think He will ask the details of my sisters MS? Only my husband knows I am being checked for me and I don't want to worry them.

 

It is good to have you people on here to chat to.

 

Thank you.

 

Anne

 

  • Like 1

Share this post


Link to post
Nick

Hi Anne,

 

John always gives brilliant advice! This is a very difficult time for you, something that a lot of us here understand as it mirrors are own experience of this 'limbo land' time.  As John says, start noting down symptoms and also your concerns.  Together these can be condensed down to a list that can be used when you get your appointment. This way you will not forget to pass on valuable information to the neurologist.  It will also give you a chance to ask the questions you want.  Take your husband along to the appointment as this will help as well. 

The sooner you have a better understanding of where your problems lie, the better. The 'not knowing bit' is very hard on yourself and can worsen symptoms, as stress is undoubtably a contributing factor in conditions such as MS. 

Above all don't be hard on yourself and do allow others to take some of the strain. As you have not told many others, it may be time to consider how to let them know your problems.

 

Nick 


Edited by Nick
  • Like 2

Just another Warrior...........

Share this post


Link to post
Annie11

Hi Nick

 

Thank you for your reply and advice.

 

I will start a diary today (seeing neuro 14th Feb). It does feel like 'limbo land'. I do understand how it is difficult to diagnosis either way. I don't want to worry our children but think I will chat to one or two of my siblings.

 

My work is a big source of pressure as my boss has no empathy. I asked to discuss being off sick (in Sept) and was prepared to tell her but during the meeting she didn't want to know. She just wanted me to be clear about the 'business'  impact when I was sick. Leaving me with the additional worry if loosing my job. 

 

I will keep in touch and greatly appreciate the support here.

 

Anne

  • Like 1

Share this post


Link to post
Sluggish
Marina
3 hours ago, Annie11 said:

Do you think He will ask the details of my sisters MS?

Welcome, Anne  :welcome:

 

I think it might be an idea to tell the neuro your sister has MS, although MS isn't generally considered to be hereditary.

 

Is-MS-hereditary.png
WWW.MSTRUST.ORG.UK

I wish I could give a simple answer to this question but I can’t. Strictly speaking, the answer is “No, it’s not inherited” but it...

 

Unless he's also your sister's neuro, he won't know the details of her MS. It would be up to you to tell him the details, if he should ask you for any. Otherwise, maybe just telling him she has MS, and what type of MS, might be all he needs to know (if at all).

 

I'm sorry your place of work is so lacking in understanding and empathy! Do you have a copy of your GP's letter of referral to a neuro? If so, might showing it to your employers help? I'm not up on work and employment, but maybe someone else here might have some ideas for you.

 

Please feel free to ask any questions you might have, we may be on the quiet side but there's always someone who will try to help :flowerface:

 

  • Like 2

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Vegged Out
Shirl

Hi Anne

 

I'm glad you found us and have little to add to the advice my colleagues have given already.

 

My main concern is your work situation as it sounds awful. I was a teacher when I fell ill. My union stopped the harassment I suffered from my head teacher and governors. Please read this and consider passing it to your boss:

Disability rights.

Compassion is called for while you await your Neurology appointment. The Equality Act of 2010 went further than before in defining Disability which highlights the way you'd need to be treated come that day.

 

The best piece of advice I ever had was "try to ignore the things you now struggle to do; instead, it is best to enjoy and celebrate the things you are still good at". This is a good time for you to develop an interest you love.

 

We will all await your news and be here whenever you need to "talk". Diagnosis is important; understanding is imperative.

  • Like 1


Shirley  "one day at a time"

 

Share this post


Link to post
Annie11

Thank you all.

 

Chatting here is helpful.

 

I have joined a union a few months ago but my work does not recognise it as not enough employees are members. My boss has said that she believes that I do be sick when off work but she 'doesn't do illnesses so doesn't want to know the details. I took a copy of the referral letter to my meeting but she didn't even as why I have had increased sick days in the last few days. I told her that I have went privately to get appointment with a consultant, she didn't ask why type of consultant I need to see. This was getting me down so now I am focusing on counting my blessings daily, staying positive and thinking about questions for neuro (need to be prepared as appointment is for 20 mins max.)

 

Does anyone know if I need further tests e.g. MRI, can this then be done under the nhs?

 

Thank you, glad I found this site.

 

Anne

 

 

 

 

Share this post


Link to post
Nick

Hello Anne,

 

With MS, it's the neurologist who makes the formal diagnosis.  There are further tests which are often needed, these include MRI scans. All this and the following back up (i.e. MS Nurse) are fully accessible via the NHS.  I think John mentioned the fact that these days diagnosis can be quite fast, but bare in mind that there are situations where it will take considerably longer. 

Difficulty with work is something that happens only to frequently.  The legal side of things should mean you don't face discrimination, however middle management may often not understand the position.   Conditions such as MS are extremely badly understood by the general public and it can be very difficult, particularly when you don't fully understand your own situation.   That is all part of a learning process, but please don't dwell to much on all that right now. First things first..........to start with find out properly just what your problems are take it from there. 

 

Nick 


Just another Warrior...........

Share this post


Link to post
Annie11

Thank you Nikki.

 

I'm having quite a bit of pain (tight/burning) in my lower rib area. Sometimes this gets worse when I move, can this be related? I've been xrayed and scanned for this over past few years and nothing was seen. Felt like a hypochondriac.

 

Is it ok that I ask so many questions on here?

 

With thanks

 

Anne  

 

 

Share this post


Link to post
Procrastinating
Stumbler

@Annie11 , this may be what we refer to as the "MS  Hug" or Banding. It's when the intercostal muscles, located between the ribs, go into spasm.

 

More details here :-

 

https://www.mstrust.org.uk/a-z/ms-hug

 

:moonieman:

  • Thanks 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Nick

Please ask as many questions as you like.  This is after all a MS support group and that includes anyone who is affected by MS, not just those with MS.

This 'hug affect'  around the ribs is a thing I often have.  It was kind of scary before I was diagnosed, I thought it was some kind of heart attack!!!! 

It is really difficult to give any proper advice on a specific symptom.  MS is something you learn to understand and learn how to live with. We all have different symptoms and differing levels of difficulty. You do need the proper advice of the specialists, however in some ways we have become our own specialists and this is what takes the time.  Don't expect too much from your appointment, neurology is an amazing thing to understand but even those specialists can't always know all the answers. 

 

Nick 

  • Thanks 1

Just another Warrior...........

Share this post


Link to post
Sluggish
Marina
2 hours ago, Annie11 said:

Is it ok that I ask so many questions on here? 

As Nick's just said, please feel free to ask away, that's what we're here for :hoop:. I asked a ton of questions in an MS support group when I was waiting for a DX, and found it really helped.

  • Thanks 1

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Annie11

Thank you John, Nick and Marina.

 

Yes, my appointment is only for the 20 mins (and £200!) So I am hoping I can move the most important things to say.

 

Pain is especially bad today in my lower right back area, tight and burning.

 

Anne

 

 

 

 


Edited by Annie11

Share this post


Link to post
Annie11

Hi

 

Can anyone please advise.

 

I've had pain I've mentioned above has almost eased but that are is still painful to touch, some parts more painful than others. Is this normal? Also I've had a 'crawling' feeling on some of my toes on right foot. Could these also be signs of fibromyalgia?

 

Thanks

 

Anne

Share this post


Link to post
Procrastinating
Stumbler

@Annie11 , some symptoms of MS also present in Fibromyalgia. This is how it's defined in MS :-

 

 

Altered-sensations.png
WWW.MSTRUST.ORG.UK

These unusual sensations are a type of nerve (neuropathic) pain. Although the feelings seem to be in the skin, they are...

 :moonieman:

  • Thanks 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Annie11

Thanks John.

 

Have had a few of those other sensations too.

 

Limboland is challenging.

 

 

Anne

Share this post


Link to post
Procrastinating
Stumbler

Hang in there Anne. Have you seen the Neuro yet?

 

:moonieman:


Edited by Stumbler

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Annie11

Not yet John, seeing him on 14th Feb. Told one if my sisters who said I don't look like someone who has ms. 😂😂 my GP has told me she wants to rule out ms. 

 

One minute I'm thinking this is fibromyalgia then the next I'm thinking could this be ms. I'm sure it's a normal experience. I had an mrion my lumbar spine in Dec 17 as pains in leg, showed some arthritis. Over past year increased sensations. I understand it's a slow process to confirm either way. Chatting here helps me, so thank you. 

 

While I'm typing this I feel above my lip twitching like mad, another new one! 

 

The joys. 😂😂

 

Anne

Share this post


Link to post
Procrastinating
Stumbler

Anne, you are bound to be considering all kind of medical conditions until you receive a formal diagnosis. That's understandable.

 

So, your Neuro appointment is on Valentine's day. Ensure you prepare a short summary of symptoms, with dates if possible, to take with you and give to the Neuro. This will save time at the appointment.

 

And, yes, it is good to talk with like-minded people. The Internet/Social media has paved the way for this. I remember the days when we were alone with our diagnosis. Talking allows you to understand that we don't look ill with MS. It's an invisible condition. You could actually be living fairly close to another MSer without ever knowing it.

 

Take care and try not to worry.

 

:moonieman:

  • Like 1
  • Thanks 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Annie11

Thank you for the advice John, it helps.

 

Anne

  • Thanks 1

Share this post


Link to post
Annie11

Hi

 

I've another couple of questions.

 

Started Ampitripilin (half a 10mg tablet) a week ago. The burning in my feet and lower legs has definitely eased, is this a coincidence? Also, the burning in my ribs (right side  and back) which was also painful to touch has lessen, although still there, could it be the tablets or just a coincidence? I thought it would take longer for them to kick in.

 

Many thanks

 

Anne 

Share this post


Link to post
Procrastinating
Stumbler

Anne, I don't think you need an answer to that question. As long as the burning is eased, then it doesn't matter if it's the amitriptyline  or the placebo effect.

 

Amitriptyline is used for neuropathic pain, but it is also a mild anti-depressant and also a mild sedative to help you sleep. Be wary of this last aspect. Ensure that you do not take this medication later than 12 hours before you intend to get up the next day. This avoids a drowsy feeling the next day.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Annie11

Thanks John.

 

I never thought of that, true it's just good to have less discomfort. 😊

 

Hope you have a good weekend.

 

Anne

 

Share this post


Link to post
Annie11

Hi again

 

Woke with a painful right frontal headache (nothing new, have been having for few years). This time I also have sore right side of neck (at back of head) and sensation on right side of face, not painful just strange. Not sure how to describe, light tingling/touching feeling? 

 

Could be bit of arthritis as have in bottom of spine. Any thoughts?

 

With thanks

 

Anne


Edited by Annie11

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • just been referred to a neurologist for suspected ms

      Hi I'm being referred to a neurologist from my gp as she seems lost now as to what is wrong and after a chat today she suspects it's ms. For 12 weeks now I've had tingling in my lower half with numbness/wet feeling in my knees but over the last 6 weeks ish it is now in my arms and face. I've been on every pain relief going and nothing is stopping it plus With my vision it's as if I'm in a trance all the time and with some new tabs I feel drunk . I've had neck and lumbar X-rays and an bloods done for nearly everything and they were all fine. I've had over 4 weeks ago a lumbar mri and still waiting for results but the doc has said today if I had a herniated dics I would of heard back by now so she has to think of what step to take next. She said for a while she has thought it has been early ms signs but didn't want to worry me. She now is going to see if I need to go for a brain mri before seeing a neurologist as I could be waiting months for an appointment. I'm scared but unsure what to think at the moment. These seem to be my main symptoms,   Tingling all over Get pins and needles very easily Feels like Sciatic pain mainly right leg Vision seems like I'm in a trance Sometimes feel very woozy Go light headed quite abit Ringing in ears(tinnitus) Left Eye twitch on and off Slight hand tremors but worse in the morning Stiffness in my lower back I do get rather low in myself quite abit but would not say depressed and I can't handle any kind of stress, I seem to loose my temper very quickly.   Any kind of advice would be appreciated. Thanks

      in General Discussion about MS

    • Got Neurologist Appointment

      Hi.   So I have my appointment. My doctor wrote that it's urgent, so I am being sent to a hospital quite far away, because the local hospitals has a 6 months plus waiting list. I'm being seen in July, the 12th. There was a closer date, but it was during one of my exams, which I can't miss.   What can I expect? This is my first appointment with a neurologist, though I have had an MRI before because about 15 years ago they thought I was epileptic. They found something on my brain then which resembles a lesion, but nothing ever came of it and I was diagnosed with type one diabetes which kind of took over.   All my symptoms after I've put down to diabetes, or over working, or whatever. (I did wrote all this in the introduction). But I am on the insulin pump now so I don't hypo all the time like I used to, but I still get dizzy spells and vertigo. And I've been tested for damage to nerves from diabetes, and my pulse and reactions and that are fine. Diabetic consultant says I haven't been diabetic long enough or had bad enough control to cause damage, and the tiny blip on my eye (one burst blood vessel) wont cause my blurry vision.   Thing is, I've been scared to tell anyone that I've been getting numbness, pins and needles, and pain, in my right arm and hand, because I was scared I would be told it's diabetic damage.   I've been seen by rheumatology because they thought I had rheumatoid arthritis, but the only thing the rheumatology people found was that I'm hypermobile. They did point out that by grip is weak, but when I pointed out my claw hand (my fingers wont straighten in my right hand unless I force them to by my other hand) they just said they didn't know what caused it and gave me some exercises to do (which make it worse).   A few years ago I was diagnosed with trigenimal neuralgia. But they did a scan of my head to look for nerves touching blood vessels and found nothing. I never got to see a specialist for that, and I didn't really push it because I decided it was probably tooth pain (it went to my forehead but I figured it was probably caused by tooth ache). My GP wasn't so sure. She's lovely, and really listened to my symptoms. All the stuff, blurry vision, hand issues etc, tends to be on my right side mostly.   I fall over a lot. Sometimes it's because I trip. Sometimes I have no clue.   I have no balance whatsoever. My husband is doing a degree is psychology and so has to do some neurology in it. He has done some of the tests onme already like getting me to stand still then close my eyes. Apparently I sway, but last week or so I actually fall over. And I can't do the putting one foot in front of the other.   Anyway, what can I expect from this first appointment? And what do I do? Schedule

      in General Discussion about MS

    • Referred to neurologist

      Hi.   I'm a type one diabetic with other autoimmune diseases, so I was reluctant to go to my doctor with the numbness because I was concerned she would say it's diabetes related. But it isn't.   When I was about 19 they found an abnormality on my brain. They called it a mass on my forth ventricle, but no follow up was done on it and it was about the same time I got diagnosed with diabetes, so that took priority.   I've been being seen by rheumatology who tell me I have joint hypermobility, but that doesn't explain the weakness I feel and the numbness.   About 6 or 7 years ago I was diagnosed with trigenimal neuralgia. My doctor believes this to be a potential sign of MS.   I had an appointment with her today and she has decided to refer me to neurology.   So, just really wanted to know what to expect.

      in General Discussion about MS

    • Awful neurologist appt. What next?

      Ok, nothing to see here...I'm feeling sorry for myself, so just need to offload :)   The worst of my symptoms started 6 months ago. It took 3 months to convince a doctor that, yes, this was serious, and then 3 months from referral to finally seeing a neurologist.   The neurologist was running 30 mins late, it was obvious he was trying to rush through and make up time. He hadn't read my notes, didn't have a clue what I was there for.   Within 15 mins he'd declared that I was fine ('You seem to be walking ok') and that I definitely didn't have 'anything serious like ms' and that he was going to discharge me. He wasn't even watching most of the time he was performing the tests. :/   When I described the mobility issues I'd had and how for the first time in months I was finally now able to leave the house on my own and drive, he said 'Well, you seem to be getting better, it's not a neurological problem'. He declared that my 24/7 muscle tightness/spasms couldn't be neurological. I saw him write down 'stress' on his notes :/ ( stress can contribute to disease, but I've not seen it cause a person to lose their pincer grip or be too uncoordinated to walk!) His only recommendation ws that I should exercise little and often. He asked how far I could walk and I said to the corner shop, 3 minutes away. He said ' well do that several times a day'. { sigh}   As he was trying to shove me the discharge paper, I kept pushing him by saying 'well what about x symptom...what about this?' In the end he conceded to me having two blood tests (one of which the doctor had already done, twice). When I pushed him again he begrudgingly said 'Oh, well, I suppose it could be something like fibromyalgia, I'll write a note to your doctor.' And with that, he ushered me out of the door.   I felt so let down, I ended up pouring out my frustration to the nurse doing the blood test, whose sympathy and kindness was probably the only reason I didn't leave the hospital sobbing.   To make matters worse, I phoned straightaway to get an appt with the doctor I've been seeing for the past 6 months, only to find out that they've left the surgery. Feel like I'm back where I started 6 months ago.   So...what do folks recommend I do next? I never want to see that neurologist again (I can't anyway, as he's discharged me!). I've had 6 batches of blood tests, which have shown nothing and excluded quite a few other possible diseases. I never use the doctors unless it's serious (I.e. cant walk/can't breathe). I know I'm not imagining things. MS or not, most of my symptoms could well be explained by something neurological in origin. And yes, I might be a little better, but I'm not a fraction of the person I was 7 months ago. My(ex) doctor said he couldn't authorise a MRI, only via the neurologist.   Apologies for whinge. Having to put a brave face on for family, but needed to offload.   Moving on...

      in General Discussion about MS

    • Went back to the neurologist today

      Went to the neuro and I will be getting another MRI in the fall because he didn't like the amount of spots on my last one. And he might take me off tecfidera and put meon some once a month iv treatment. I'm thinking he suspects something more than RRMS.

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×