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Annie11

Waiting to see neurologist.

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Crappy
Marina

I get something not uncommon in MS called Trigeminal Neuralgia (aka TN), but I get the "atypical" kind. I often, if not always, have an achy side of the neck with it. I sometimes also get what might be a migraine, which is also accompanied by a pain in one side of my neck. You might want to look at the links for TN in our Resources section here: https://ms-people.com/forum/links/category/10-symptoms-and-diagnosis/

 

The sensation on one side of your face - in the year before I was DX'd, I had a sort of numbness that felt like when a dental anaesthesia is wearing off. Initially, it was thought to be Bells Palsy but I was later told it wasn't but was due to my MS. This sort of sensation falls under neuropathic pain, such as is described in the link Stumbler posted earlier:

 

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 actually due to damage caused by MS which disrupts...

 

I doubt arthritis at the base of the spine would affect one's head and neck, as anything nerve related in the base of the spine is more likely to affect one's body below the base of the spine.

 

These are both things I'd add to your list of things to tell the neuro when you see him on 14 February.


Marina

(belated DX in June '05, SPMS)

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Shirl

Hi Annie 

 

This sounds like a neurological event rather than arthritis. However, arthritis in the top of your spine would account for some sensation disturbances below the arthritis rather than above it.

 

All this is from a lay person whose only "medical knowledge" has been learned in the Hard School of Knocks.

 

So, back to square one.

a) see or call your GP if you are really worried

b) add this event to your symptom diary, explaining it in the words you've used here

This could be a form of migraine.

 

Again, I'm writing from experience - we are all so different.

 

Take care of yourself, Annie.

 

PS I wrote my response at the same time as Marina even though it looks as if I copied her!

Trigeminal Neuralgia also went through my mind, as I have that too.


Edited by Shirl
PS


Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Annie11

Hi Marina and Shirl

 

Thank you for your helpful replies. 

 

It feels exactly like an a dental anaesthesia wearing off, perfect description!

 

I am not worried about the headache, have been in hospital twice before with these. I do get migraines too, usually without aura. It was the new pain in my neck and weird side if face feeling I was wondering about.

 

I had to take off work today which adds stress as my boss is not supportive, she has no time for people being sick!

 

Appreciate your help and I will add this to my diary for the neuro.

 

Many thanks 😊

 

Anne

 

 

 

 

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Shirl
20 minutes ago, Annie11 said:

Thank you for your helpful replies. 

It is what we are here for, knowing how lonely it feels to have unexplained ill-health on a long-term basis.

22 minutes ago, Annie11 said:

 

It feels exactly like an a dental anaesthesia wearing off, perfect description!

I've been reminded of this is reverse order - I had dentistry yesterday. The wearing off from the injections to 2 sites felt just like TN trying to start again - phew, it hasn't.

 

24 minutes ago, Annie11 said:

 

I had to take off work today which adds stress as my boss is not supportive, she has no time for people being sick!

Your unsympathetic boss is in danger of being in breach of the law. Once you've seen the Neuro the time may (very sadly, for you) when your boss has to be acquainted with 

opengraph-image-a1f7d89ffd0782738b1aeb0d
WWW.GOV.UK

You’re disabled under the Equality Act 2010 if you have a physical or mental...

 

 

I stress, you are not here yet BUT your ill-health pattern is part of a process. So ignore your boss but note every spell of time off work in that symptom diary - and your boss's attitude.

30 minutes ago, Annie11 said:

Appreciate your help

Thank you, Annie.



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Annie11

Many thanks Shirl. I must start taking notes about my bosses attitude. I asked to meet her and when I did, she didn't want to know why I had been of work. Just what the impact on the business would be. 

 

 

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Shirl
4 minutes ago, Annie11 said:

Many thanks Shirl. I must start taking notes about my bosses attitude. I asked to meet her and when I did, she didn't want to know why I had been of work. Just what the impact on the business would be. 

 

 

That's your first note about her. Now add the rest and dates if possible.

Does the firm have occupational health department? 

These are parts of the ammunition you may need for making a case for being misunderstood.

Main thing today is REST :sleep4:



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Annie11

Many thanks Shirley.

 

We don't have an occupational health dept. 

 

Just got a call to say my appointment had to be rearranged. 🙁 Neuro has a relative very ill, so can't be helped. 

 

thanks

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Nick

Hi Annie,

 

Your position is very familiar to many of us here, who had to go through the same difficulties and complications of being in 'Limboland', not sure of anything and feeling misunderstood.  One reason, I believe that, the forum here was set up, and exactly why you are very welcome here.

Work related problems and people not understanding neurological conditions, nor their understanding of employment law, leads to the situation you now face. 

The important thing to realise is that the number one priority for you is to look after yourself and try and put these pressures to the back of your mind. Not an easy thing, we know.  At the moment you don't actually know exactly what's wrong and this may take some time. To help with the forthcoming appointment you need to try and give the neurologist as much information as possible, things that you might not think as very important may be important to her. So do keep some kind of record of what's happening.

It's a tough time but things will become clearer and in my own experience better, when you do find out where the problems lie.

 

Hope that helps

 

Nick

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

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Annie11

Thank you Nick.

 

Yes it would be great to know what is going on. Had 3 days in a row of migraines 2 weeks ago. Think it could be fibromyalgia, nerve pain from wear and tear in my spine, who knows just would like to know. I don't have balance problems.

 

Having weird feelings in my face, hard to describe like light touching sensations as if it was about to twitch  but doesnt. Not sore just strange. 

 

Have kept notes for neuro, summarise main things as appointment is for 20 mins. He'll think I'm crazy the list of different sensations.😂

 

 

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Nick

As you may already have read in different posts, it is not really advisable to self diagnose yourself via the internet! I think we have all done it, but best left alone.  There are two things about your current situation which make it particular hard. Not knowing what's wrong and not knowing how serious things are, would be the first. It's not like you have broken an arm, where you know where the problem lies, and you know where the solution lies.  Neurological conditions are different, they are often 'invisible' to others and very difficult to quantify by the patient.  The Brain and CNS are indeed complex, wondrously so and still not fully understood by science.  

The second point is related to the first, in that being put in this 'unknowing' situation will inevitably lead to huge amounts of stress. This in turn means you are desperate to find a solution ( as if it were like a broken arm) 

We have all felt like this and yet as we have gained knowledge and now have a name for our condition, so we have changed the way we look at things.

In the case of MS there is no 'cure'. This does not mean we can't do anything about it!  We can change the way we life and learn to live with the condition, thus removing most of the stress.  Various drugs can mitigate symptoms and DMD's which may or may not be appropriate, can also help. 

Some of the biggest help I have had comes from the simple method of having contact with others in the same boat.  Knowledge is power and learning all about your specific problems from both neurologists and others are a major step forward, Something that inevitably takes time. 

Again I can't stress the importance of trying your best to remove stress at this time. That is all part of the process.

 

Nick 


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

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Annie11

Whoops not sure what happened, posted again.

 

Many thanks for you help.

 

Anne

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Crappy
Marina
1 hour ago, Annie11 said:

Whoops not sure what happened, posted again.

No worries @Annie11, we've removed your accidental duplicate post for you :flowerface:


Marina

(belated DX in June '05, SPMS)

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Annie11

Hi had neurologist appointment yesterday. Wants me to get bloods done including vit b12 and i am to start taking preventative tablets for cluster/migraine headaches. I'm positive I'll get sorted. Thank you all for your support. Best wishes 

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Nick

Sounds Good Annie, do I detect some optimism there?

We are only too pleased to give you some help and please let us know how you get on.

 

Nick 

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

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Shirl
51 minutes ago, Nick said:

Sounds Good Annie, do I detect some optimism there?

Yes, Annie, I thought the same as Nick when I read your latest post. :clouds:

You are now on the path to finding out and, more important for your daily wellbeing, you are receiving symptomatic treatment for your head pain. 

 

We are all with you in this and look forward to an update one day.

 

Take good care of yourself - and make sure your boss knows you DO have something wrong with tablets you will need to become accustomed to.

 

Also, please don't forget to keep up your symptom diary entries. They will be useful as a monitor of the treatment effect and, God prevent, further issues or repeats of previous experiences.

 



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Annie11

Hi Shirley and Nick

 

Thank you for your replies.

 

Yes, focusing on being optimistic while understanding it is the start of 'steps' in fully knowing what is wrong. What did surprise me was how abrupt the neurologist was. I wanted to tell him about my symptoms but he just wanted to ask me a series of questions. He appeared annoyed when I couldn't instantly say how long headaches lasted etc. I felt a bit intimidated to be honest so I left my notes with him to read. 😂 Not impressed especially when 20mins cost me £190 and a journey of 140mls. 

 

Checked out the tablets he's prescribed and people gain a lot of weight so will be monitoring closely. 

 

Really appreciate your support and thoughts. I know some people don't understand as nothing visible. I will keep in touch on here. 😊😊

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Crappy
Marina
44 minutes ago, Annie11 said:

What did surprise me was how abrupt the neurologist was.

Unfortunately, Annie, that's all too common with neuros; many of them seem to be either pompous, arrogant, patronising or rude :damneuro:. Even my pain specialist, when I was in Limboland, said neuros "are a breed unto themselves!".

 

Some people are lucky and fall on a good one first time. Others, like me, went through several neuros before falling on a good one. I had one neuro sarcastically suggest I go to a sleep clinic, another who said my tremors were caused by the "anxiety written all over my forehead" (I told him his forehead would be the same if he felt like I did!), another who wondered if my symptoms were caused by "emotions" (sigh...), and another who one minute said it might be MS and the next that it wasn't and the next it might be and the next that it wasn't. I knew I fell on the right one when, on calling me to his rooms, he carefully watched how I walked towards him. He didn't poo-poo a single thing, read all my notes and asked to keep them, and DX'd me in less than a month after another MRI. On subsequent visits to him, I've seen him even walk over to a lady in a wheelchair and wheel her to his rooms - I don't imagine many neuros do that. 

 

I'm not surprised you're not impressed, after travelling so far and paying for his attitude. I'm sorry you've had to experience that. Did he not ask for any tests, eg: an MRI of the brain at the very least? I seem to think neuros are a rarity in N. Ireland; even so, was he an MS specialist? We usually suggest trying to see an MS specialist as they tend to know more about MS than general neuros.

 

Please do keep in touch, that's what we're here for :flowerface:


Marina

(belated DX in June '05, SPMS)

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Annie11

Hi Marina

 

Glad to hear you have experienced this type of attitude, was wondering if I was an idiot. 

 

He never mentioned any tests except blood. He specialised in epilepsy. There is a serious shortage of neuros in NI. No MS specialists work privately and a 3 year waiting list on nhs. Hevtold me the exhaustion I have is due to bring tired with migraines. Checked my reflexes, asked me to identify which hand He was waving, to walk about 4 steps then 3 heel to toe steps and turned away while I was doing it. When I thought about it this morning I felt quite angry. I am normally a assertive person. 

 

Many thanks Marina.

 

Anne

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Annie11

Hi

 

Just thought I'd say hello.

 

I've been keeping amazing well apart from the headaches. I am hoping this continues! No flare ups since.

 

My GP has just received neuros letter. He has prescribed preventative tablets for the migraines Pizotifen. Starting with one per day building to 3. Took one at night and slept most of next day. GP has advised just taking a half at start. 

 

Really appreciate the support i got from you on here.

 

 

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cc1979

@Annie11 @Annie11 I'm glad to hear you are doing well these days. I'm new to the forum and noticed you're in NI so I hope you don't mind me jumping on your thread to say hello! I too experienced an arrogant neurologist so I can empathise. I'm surprised they didn't order an MRI scan for you. I had one on Monday and the neuro rang me today to say there is inflammation showing at the base of my skull. So next I have to have blood tests and a lumbar puncture done - eek!

 

So happy for you that things are going well and you're getting some relief x

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Shirl
On 11/04/2019 at 23:38, Annie11 said:

Hi

 

Just thought I'd say hello.

 

I've been keeping amazing well apart from the headaches. I am hoping this continues! No flare ups since.

 

My GP has just received neuros letter. He has prescribed preventative tablets for the migraines Pizotifen. Starting with one per day building to 3. Took one at night and slept most of next day. GP has advised just taking a half at start. 

 

Really appreciate the support i got from you on here.

 

 

Hi Annie

 

I read this post a few days ago but, being unwell at the time, have only just come here to respond. I am so pleased you are feeling more positive but sad about those headaches. I hope/trust the new med is helping you.

 

The support here comes from experience. We all have something to offer each other. I'm glad you've found this to be true.

 

 

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Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Annie11

Hi all

 

Just to update you.

 

I Continue to have regular, sometimes severe migraines but the strange leg and arm feeling (like jumping nerves) are back alongside the odd hands spasm. Disturbed sleep, waking up and unable to sleep again for hours and severe calf cramps. (Have had foot and leg cramps before but had one last night when sleeping and still tender tonight, feels like the muscles are still ‘jumping’ a bit. The pain was so bad I jumped out of bed yelling but couldn’t stand, felt dizzy and nauseated (maybe with jumping up fast). Cramp took a while to start easing, I was crying with the pain.

 

My GP has kept meon the list (3yr, waited one already) to see an NHS neuro. Saw private one in Feb. 

 

Wondering if if anyone else has the above type symptoms? I just feel there is more than chronic severe migraine going on. 

 

Appreciate that I can chat here as think I’m going crazy sometimes.

 

many thanks

 

Anne

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Procrastinating
Stumbler

Hi @Annie11 ,

 

Are these migraines helped by the Pizotifen? And is it taken regularly or reactively?

 

Muscle spasms and cramps are a nuisance, especially at night when sleep is disturbed. Gentle exercise, specifically stretching can help in this respect. Have a look through this webpage and links for suitable exercises, concentrating on stretching:-

 

exercise%20web.png
WWW.MSTRUST.ORG.UK

These pages look at how being active can help people with MS. As everyone's MS is different, so is their capacity for exercise. Whether you feel able to practice some gentle stretches or...

 

There is also advice here :-

 

 

default-social-image.a74435697f45.png
WWW.NHS.UK

Leg cramps are a common condition where the muscles in the leg suddenly become tight and painful.

 

Also, a Magnesium supplement may help. This is something that you can try.

 

It is now some six months after you spent £200 on your Private Neurologist. Has anything come of this other than the prescription for Pizotifen? Bloods were taken, did this assist the Neuro and what were his conclusions or their planned next steps? You may want to discuss this with your GP, to get their view on what you should have expected for your money.......

 

: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

Hi John

 

Thank you for your message and links.

 

Regarding Pizotifen,  it made me very sleepy and my employer wasn't happy that I was missing work in the mornings so I stopped them. Still taking Sumatriptan which usually helps the headaches.

 

Doing stretching exercises and have started a few new ones.

 

My blood tests were all ok. I haven't see the private neuro since (too expensive). My GP still wants me to still see the NHS neuro and have a mri (could be up to another 2 yrs, been waiting a year already). GPs can refer for mri it has to be through neuro.

 

My feet are still burning and have the muscle twitching back too. I can see the muscles rippling. Thinking maybe this could be lack of magnesium too.

 

It's been a while since I've had an attack like this, usually just exhaustion and headaches.

 

i have sourced support via Access to Work Condition Management Programme. The Cedar Foundation are going to support me in speaking to my employer who is very unsupportive - adding to my stress.

 

Appreciate your support (especially when I don't  have a MS diagnosis). It can be a lonely place when you have an invisible health condition.

 

PS i wrote this message after seeing your one but must not have pressed the send button.

 

Anne

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