Undiagnosed and just needing some info and advice

[Katie]

Hi, I was registered on this site some years ago. I have been experiencing problems for 8 years now but am currently undiagnosed and I don't necessarily think it's MS I have but would value your opinions in whatever area.

 

I went through the neurologist 5 years ago with not the greatest experience. After and MRI and Nerve Conduction Studies revealed nothing, the consultant, running late just revealed that info and then dismissed me telling me to just take Amytriptline and increase the dose as and when things progressed. I've now been on them since.

 

I have been very reluctant to go through the investigation procedure again after that outcome as I was left to feel I was making a fuss about nothing but in the last few years the problems have become more difficult to ignore.

 

I started out with just right sided facial pain but since have developed right sided pain all over my body.

 

I have various issues with stabbing pain in my eye, arms, hands, legs, feet. Numbness in feet and fingers, distorted vision and weakness on my right side. My writing has become terrible as I don't have the strength to control the pen properly. Even typing this makes my hand and arm feel 'tired'.

 

The attacks have become more frequent. I kept thinking I was coming down with something, was so tired I could just sleep where erver I was - my desk included! Had pain, weakness etc. It was only because I would say to family when I felt ill that they commented that it was way too frequent and there were no cold or flu symptoms.

 

There are many other problems including depression, confusing my words, forgetting my words, constipation - nearly always.

 

So after a 3 week attack I went back to the doctor - thankfully not my usual one who last said ' you'll probably never know what is wrong'!

 

This one has been amazing, said she would start at the beginning again. She did loads of bloods which only revealed a low iron count which I wasn't willing to take supplements for due to the constipation I already suffer . She then sent me for some more blood tests including ANA's. This returned a positive result!

 

However, further definitive tests were negative so they said it was likely to be non-specific.

 

I have now been referred to neurology again for more investigations following this result.

 

I have just come down with a cold as several of my family have only I can barely stay awake and the pain in my legs and ankles and face make me just want to curl up.

 

I'm an active 'won't be told not to do things' kind of person so I am hating these restrictions I am starting to face and am scared stiff of having something that is getting progressively worse but also scared I will be dismissed by the neurologist again.

 

My sister was recently diagnosed with Lupus which may or may not be relevant?

 

I am really just looking for anything any of you can relate to or anything you know about positive ANA's but negative others test and my symptoms and ... well I think I've bleated on long enough! If any of you are still awake at the end of this I'd really love to hear from you.

 

I know I probably don't have MS so am intruding a bit but I remember how great you all were before and really need some advice from people in the know and to be honest, I think my family are completely bored with me saying I don't feel well and going on about my pains so I try and keep quiet now and get on ... but that's getting harder

 

Thanks again.

Katie

Edited 29 Jun 2014, 11:33 am by Marina
Separate paragraphs

[Stumbler]

Well, I read it all. What do I win?

 

But seriously, you have allowed yourself to be run a bit ragged by all this. We all like to think we're invincible, but from time to time, we have to swallow our pride and ask for help.

 

From what I've just read, positive ANAs are a sign of an auto-immune problem, so the Neurologist is the best person to investigate these problems.

 

Take this referral as a completely new experience for you. List all of your symptoms and take that along with you so you can leave a copy. Be positive and work with the Neuro to get to the bottom of this. But, where, necessary, be assertive and polite to maintain the direction of these investigations.

 

Good luck with this referral.

 

In the meantime, go easy on yourself. There's something going on and ignoring it and carrying on regardless doesn't appear to be helping.

 

[Skippysprite]

Hi Katie

 

John has given you good advice, definitely best to see a neurologist. Between now and your appointment try keeping a diary of symptoms, and take that with you, not so much too hand to the neuro, but it will help you in not forgetting anything. Also, if you can, get someone to come with you, it can all be a blur and easy to forget what was said.

 

Your gp should be able to offer some medication to help before you see the neuro, so ask if you think any is needed.

 

Try to be kind to yourself, best wishes, and please let us know how you get on.

 

Pam

[Mal]

Nothing to add really Katie , all good advice !

 

stick with it , there is obviously something going on that needs to be treated!

 

best wishes

Mal

[Scully]

Hello Katie,

 

I think I remember you from when you were first on the site. Never think that you are 'intruding' on here. The whole point of this forum is two fold....

We are here to help, support and advise you, from our own experiences.

And

Members can 'dip' in and out of the site whenever they feel they need to.

 

I agree totally that you should look upon this new referral and possible new 'work up' as a new experience. You've every right to ask for help from a neurologist to get to the bottom of whatever is causing you such distress. As hard as it can be to 'jump through the hoops' of the neurologists again, it can only be positive for you.

 

Many of us here have had to seek more than one referral. But progression will merit a repeat referral from the GP.

 

ANA's seem to be a complex area with many reasons for a 'false positive' result, and many more reasons that require further investigations, so your GP is indeed on the right track in referring you back.

 

Regarding the pain in your face. See the dentist and rule out anything with your teeth that may be causing this pain. The reason I say this is that. A stabbing pain in your face, perhaps could be something called Trigeminal Neuralgia, but equally can be a troublesome tooth or root abscess. The first thing my neurologist asked me was had I seen a dentist...I produced a short note from my dentist saying that examination and X-rays revealed no dental problems.

 

It's important to not only keep a diary, but also a time line of symptoms. But, do keep it short, concise and to the point. Neurologists have a limited time with you, and are unlikely to wade through pages and pages of your notes.

 

Something like

Symptom, Date of symptom starting, duration of that symptom.

Try to get it on one sheet that he can put into your notes.

 

Always a good idea to have someone sensible with you at the appointment. If only to take notes or prompt you if you forget something.

 

Stick with it Katie, and remember we are all here to try and help.

 

Scully

x

[eliza]

You have been given good advice by the above, write it all down however pathetic it sounds, if its not normal for you its not right. There could be many things that it could be, some symptoms like yours just do go away or are caused by stress. However yours have got worse. Your symptoms could be any immune conditions especially as you have a family member with one. From fibromyalgia to me to many others.

Get it sorted. don't be fobbed off next time. You need an answer.

[Katie]

Thank you, all of you, for your replies.

 

I have written a list of symptoms that have developed over the last few years as I showed my GP when I went back recently and I said to her that I have put everything I could think of on there, whether I thought it was relevant or not.

She advised me to take to neurology but advised they don't like lists much so I guess I will have to decide when I'm there whether to use myself or hand over.

 

Scully - both the dentist and optician have ruled out any connection with the face pain. Both have said they believe it to be something for a neurologist. I was originally diagnosed with TN but I disputed that as I have read about it and my pain is not that severe. More nagging with the odd stab.

 

Anyway, the doctor said she would chase up the referral and the surgery have just called to say they have been told there is at least a 15 week waiting list, possibly more now that two consultants have just left! That's not really what I wanted to hear but what can I do?

 

I just want to ask something. I mentioned in my original post that I have had a cold and it has brought on other problems but I don't know if these are virus related. My daughter and sister had the same cold and were a bit under the weather for a few days but then fine. I however, have had the normal cold but along with it the most horrible pains in my leg that despite being at the coughing end of the cold now, are still there and possibly even worse. I have throbbing in my ankles and knees and it feels like I have been walking with bricks strapped to my ankles! I can't stand up for long as they ache so much. I have spent two days pretty much sofa bound or at least sitting down after being only 5 mins active.

 

Problem is we are moving offices and I have been expected to lug my stuff up and down stairs. Unless you explain the whole history of problems you just sound like you're making a fuss so I did what I had to do and have now come home in a lot of pain and tired. I still think they thought I was just trying to get out of it.

 

How did you all deal with those situations when you were feeling bad but hadn't had a dx?

 

Katie x

[Stumbler]

OK, Katie, a couple of things.

 

Firstly, if it is an auto-immune problem then any run-of-the-mill infection can cause you problems as your immune system may not quite behave itself. This can give additional problems, which should resolve once the underlying infection clears.

 

Secondly, we all like to push ourselves, but sometimes, we have to "listen to our bodies" and act accordingly. Otherwise, our bodies will start to object and cause us more problems.

 

That waiting time sounds horrendous. One option is to opt for a private referral to see if you can get the situation diagnosed quicker. Then, you'd know what you're having to deal with and go back on the NHS list. Now, this may not be financially viable for you and you may have to wait, unless your GP can add some pressure and you can opt to pick up a cancellation appointment at short notice.

 

Otherwise, do try and be kind to yourself. You could also confide in your boss that you are being referred to diagnose possible MS and see if they can make some allowances for you.

 

[Marina]

I have read about it and my pain is not that severe. More nagging with the odd stab.

 

Katie, that can still be TN. "Atypical" TN isn't the sharp sudden stabbing pain that TN normally is.

http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia

 

I have atypical TN, as DX'd by my neuro, but it was a dentist who first told me I had TN. It's not sharp stabbing as such although there is some stabbing, but various parts of one side of my head and neck are very painful. During milder attacks, it could be said to be nagging. I get it in my eye socket, cheek, sinus area, jaw behind the ear and neck. I tend to describe it as feeling as if I've been in a world championship boxing match. When it's really bad, I can't speak on the phone as the sound is unbearable. I've been prescribed Tegretol for it, which helps but I don't take it all the time for fear of side-effects; I should take it all the time as it does seem to help prevent attacks or take the edge off them.

 

I'd take your notes with you to the neuro, regardless of what anybody says. My neuro loves my notes and even asks to keep any scribbles I took which I hadn't intended to give him! Not all docs pay attention to notes though... some like them, some just push them to one side and ignore them totally. I tend to base what I think of them based on whether they bother to read the notes or not.

[Katie]

Hi Marina,

 

That's exactly where I get the pain and what it's like so maybe it is that? I can completely relate to the phone thing, I can't handle it either or too many conversations going on, too much noise, bright light or things moving too fast even!

 

I will take the notes and try and give them to him - see if he will take notice! I certainly won't let myself be fobbed off like last time. I know something is wrong and I need to find out what now.

 

Stumbler - I have thought about private but if I could only afford the consultation I'd be back on the waiting list for the tests anyway so would I be any better off?

 

Also, I have confided in the bosses wife as we get on well and she will relay things in a good way :-)

I think I do need to start listening to my body more. Just have to hope the boss understands!

 

It's just unfortunate we happen to be moving offices this week as normally I would be desk based mostly. Hopefully I will be in for a better patch once this one passes anyway :-)

[Nindancer]

Hi Katie, you've had lots of fab advice already, I hope you get some answers soon.

Sonia x

[Marina]

Yes, it would sound like your face pain is atypical TN, and if you were originally DX'd with TN, then I suppose it is?

 

15 weeks? That's an outrageously long time to wait when you've got symptoms like you've got. I'd keep harping on about it if it were me. Actually, I did harp on about it when it was me... I was getting nowhere and getting annoyed about it. I wrote a letter to my then GP and a specialist doctor for something else (who was trying to help me) asking what I had to do before anyone took any notice, fall down in the road paralysed, go blind, or what? The GP ignored me, the specialist went out of his way to try to get me to see someone. And this was all private (on insurance)... Eventually, a new NHS GP I'd signed on with took instant notice and I got seen to and DX'd within a month, although the neuro and MRIs etc were private too for speed. I still see that neuro, and he was the 5th I went to... Yep, sometimes, perseverance and much patience is needed.

 

No matter what your symptoms turn out to be, we're all behind you