No diagnosis, but in need of support

New diagnosis and before diagnosis
1

Hi all,

I’ll cut straight to the chase: I think I have MS. I’m currently in the long, infuriating and stressful process of getting a diagnosis - or any kind of help - from the NHS. This time around, I first saw my GP at the beginning of May and since then it’s been a whole load of sitting around waiting for appointments and results, having endless blood tests, scans of various bodily parts (aka barking up the wrong tree) and seemingly getting nowhere.

I first saw my GP back in May 2014 because I was constantly tired. He had some blood tests done, came back and told me I had a Vitamin D deficiency, sent me away to get some supplements and all would be well, done and dusted.

The Vitamin D didn’t work, but I didn’t feel too bad, with various things like buying a house and moving in with my partner there was lots of stressful and exciting times going on so everything was chalked up to that. This year comes around and things settle back down to normal, and I start feeling exhausted all the time again. This was my main complaint, but had lots of other stuff going on too, constantly itchy legs, aching joints, bad bowels, headaches. I finally saw my GP in May 2015, and am still undergoing tests to figure out what’s wrong with me. To begin with, I was almost certain it had to be a thyroid problem. However, I’ve had three thyroid screening tests carried out and every time the results have come back normal.

In the last few months, my symptoms have much worsened. My legs ache CONSTANTLY. I feel like I can’t walk anywhere. I’m constantly exhausted, regardless of how much sleep I have at night (95% of the time, I sleep fine and undisturbed). Joint and muscle aches occur all over my body. I’m constantly getting bad headaches and my vision feels fuzzy, for lack of a better word.

I’m so, so very sick of feeling like this all the time, with no end or answer in sight. Fed up of having to lie to people when they ask how I am, and the few that know I have been feeling unwell, I’m tired of them asking “are you feeling any better?”. I know people mean well, but it’s really getting me down. I feel like nobody really understands how bad I feel, and I feel like most people probably just think I’m exaggerating or just “in a mood”, when in reality, every single thing is a massive effort, yet I still have to carry on normal life and act like I’m just fine.

I should add, I’m a 27 year old female, and up until the last year or so when these symptoms started, I’ve been perfectly healthy.

I know there isn’t an answer, and of course you guys can’t offer me a diagnosis, but I just needed somewhere to vent a little. So thanks for letting me do that.

2

I know exactly how you feel, I am also waiting on dx. I went to GP because I had a lump on my arm, while examining the lump my GP noticed the tremors in my arm and hand, she asked a load of questions and said she suspected MS. I put the tiredness down to stress at work, the left arm and leg I thought was from sports injury and the pain in left eye I thought was from not wearing my glasses. Since then I have had MRI which showed brain lesions, but not in the right place to dx MS. I have had lumbar puncture and MRI with contrast and am waiting for visual evoked potentials. Neuro will not disclose any results until all tests are done so from April I have been in limbo. Been to eye clinic for optic neuritis, optic nerve is not scarred. I have had 3 courses of Dexamethasone and neuro told GP to give me acyclovir to see if I possible had shingles - no I didn’t thank you very much and taking them made me drink more and thus bladder problem escalated! Be thankful that has not been one of your symptoms. Visions is fuzzy and headache is blindingly painful. Hang in there, you are not alone and I get great advice and comfort from the wonderful people on this site. Good luck with your dx, I have learnt from this site that it takes a long time and the end result may not be what you expect.

3

Thanks very much for your response.

After looking around the forums for a while, I’m astounded to see how long most people have been waiting for a diagnosis. I feel bad complaining as I’ve only been waiting a few months in comparison to years in some cases. But honestly, I don’t know how you are all doing it. I already feel like I can’t cope feeling like this for much longer. Painkillers don’t help, got codeine at the minute and even that does diddly squat. My doctor hasn’t given me any kind of medication I presume for the simple reason he doesn’t know what’s wrong with me.

It doesn’t help that since I don’t “look” ill, I feel like nobody quite believes that I’m suffering; I’m not getting much support at home, I always feel like I’m letting my partner down if I stay in bed rather than go to work… but some mornings, it’s just necessary. Of course I don’t “want” to have MS, but just getting a diagnosis will be something, because feeling in limbo is just the worst, and being told that all tests are coming back clear just makes it look even more like it’s all in my head.

I haven’t yet had an MRI, so of course MS isn’t the only option, but after having undergone a LOT of other tests, and nothing else coming up, at least from my perspective it looks like it fits. Having done a fair bit of research, it fits my symptoms perfectly, and nothing else explains them in the same way - except of course multiple isolated factors, but the majority of obvious things have already been tested for (multiple times).

To all of you who have been going through this for several years, you’re amazingly strong people. I don’t know how you are doing it, because I’m not sure how I’m going to.

4

Hiya Max,

Some have a go at me for advising people of this complaint but tough on them.

Yes MS does cause headaches but they are far worse and can be constant with a complaint called Hughes Syndrome (HS). See Antiphospholipid syndrome (APS) - Diagnosis - NHS and http://www.hughes-syndrome.org/

There are other indications but you will see on the website; otherwise symptoms mimic MS and can often be misdiagnosed.

It can be a very serious complaint; if you have had blood tests make sure they have been for antiphospholipid antibodies (aPL) see APS Support UK | APS - antiphospholipid syndrome

This complaint can be treated and if caught early enough can return the person to normal health quite easily with some simple well known drugs.

Good luck; as a matter of interest what does Max stand for with a young lady.

George

5

Hello Max, It took a long time for me to get a dx of SPMS I also have, as George mentioned APS ie: Hughes Syndrome which mimics AS but there are many things that could be causing you all this pain. I noticed you keep mentioning your GP but have you asked for a referral to see a Nero, I would be inclined to push for a Nero referral as GP’s are not up to speed on MS. Also if you see a neurologist they also look at all aspects of what could be causing you problems. I really sympathise but unfortunately you have to keep pushing and pushing for a dx, but don’t give up. Remember it’s your body and you and only you know how you feel. Feel free to rant, rave, moan or even do a quiet scream we will listen and understand and answer. Sending you some (((((HUGS))))) so you know you are not alone.

Janet

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6

Hi George

Thank you for your comment - really appreciate the support.

I haven’t heard of Hughes Syndrome before but it’s something I’ll keep in mind. The headaches are a relatively new addition to my seemingly ever-growing list of symptoms and complaints. Until a couple weeks ago they were fairly uncommon and quite short in duration (and largely I put them down to sinus headaches, as I suffer quite a bit with sinuses/allergies). But the last couple of weeks they’ve been more or less constant, and if they do go it’s only for a matter of hours before it starts up again.

My username (i.e. Max Caulfield) is just a pseudonym; the name of a girl in a video game I’m pretty fond of (called Life is Strange). In her case, I believe it’s short for Maxine :slight_smile:

7

Hi Janet

Thanks so much for your support.

My GP has referred me to a general medicine consultant as he had no idea what to do with me, but a neuro didn’t come into the equation - he was more inclined to refer me to a rheumatologist for the aches and pains. I have another appointment through to see the consultant, but it’s not for another 3 weeks (sigh). I assume the appointment is to go through my blood test results and echo results, which must have been inconclusive as he said he’d phone within a week if anything came up on them.

I’m definitely going to push towards getting a neurologist referral depending how this next appointment goes, but who knows how long I’ll have to wait for that. Had to wait two months (and go to a hospital out of town) just to see the general consultant - if I’d insisted on going to my local hospital, they couldn’t even tell me how long the waiting list was.

It does help to know that I’m not alone and that there are lovely people like yourself out there willing to listen and give support. Thank you.

8

Hi Max,

Sorry for late response but having now reading your reply a Rheumy could also open doors for you towards a Neuro so it not such a bad thing as it was my Rheumy who referred me to a Nero so there is hope. DON’T give up.

Janet

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