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Annie11

Waiting to see neurologist.

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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. 

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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
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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!"

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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

 

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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...........

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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

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Tired
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)

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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" - it's all anyone can do

 

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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

 

 

 

 

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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...........

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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  

 

 

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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!"

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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 

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

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Tired
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)

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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

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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

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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:

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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!"

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Annie11

Thanks John.

 

Have had a few of those other sensations too.

 

Limboland is challenging.

 

 

Anne

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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!"

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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 mri on 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

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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:

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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!"

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Annie11

Thank you for the advice John, it helps.

 

Anne

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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 

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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!"

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Annie11

Thanks John.

 

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

 

Hope you have a good weekend.

 

Anne

 

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