New here, diagnosis limbo pending MS specialist after MRI. Struggling to cope tbh

Hi All

My other half reached out to a few places and the MSsociety suggested i posted here. Apologises if this is the wrong place, i don’t know what to say or where to post.

Starting in Janary I got daily headaches and aching, sometimes pain in my right hand. Went to my GP after 2 weeks (14th Jan) and was told it’s poor posture having been working at home, go get some physio which I did. That helped the arm, not the head so back I went and was told the same thing.

End of March I got a nasty tooth abcess, Sunday morning it was a little sensitive and by Tuesday the left side of my face was ballooned up, the pain was unbearable and I had temperature. Got put two lots of antibiotics, one really strong for 4 days and a weeks course of milder ones while they did the work. Following this actually was pretty good, much reduced headaches and not a peep from my arm. In June the pfyser caused some leg aching like i’d run 100 miles, but then in July back came the headache.

So I booked myself to see a private consultant, then had a private MRI. While we waited he said it was probably chronic Migraines, put me on Amitriptalyine. That drug has it’s pro’s and con’s, its helped the headaches but my balance is shot.

Results came as a suprise, 11 lesions with one 19mm in the “deep white matter left frontal lobe” and report said “I think suggestive of demyelinating disease, differential other inflammatory, ischaemic and vasculitic aetiologies”. Consultant said “it’s possibly MS”, drew me a pretty picture of an up and down chart, let me ask some basic questions and then said goodbye, pretty suprised he didn’t shout “don’t forget to pay my invoice” as i went.

Got given a letter by the receptionist and took it to my GP for referral on NHS, that was a month ago nearly and i’ve heard nothing. Did follow up with my GP surgery, the receptionists attitude was like i’d run over her dog and she said “it’s being processed” and “they NHS are not seeing urgent cases at the moment due to backlog”, I said goodbye then as I couldn’t take her attitude problem.

As I’m sure alot of people do I started digging online then and i’ve scared myself witless. To top it all off I had a nasty chest infection couple weeks ago which stopped me going to karate training and as it eased decided to do some press ups (i’d not done any for >10 months) to feel like i was doing something. My old friend the right hand/arm pain has returned now, which further adds to my worry/concern.

I’m struggling to cope to be fair. 14th January I found out I passed my professional qualification i’d spent 10 years getting and thought life was about to begin, i could (and did) take up music, join a martial arts, both of which i’d wanted to do for years. Now I feel like theres no point, odds are i’ll never hit black belt so why bother. All i can think about is losing my mobility, what it’ll mean for my work/life and how my partner will cope if she sticks around, when i’d not blame her for leaving.

Hi,

I was diagnosed 5 weeks ago. My gait went wonky Summer last year and I was walking about as if I was constantly bladdered…Balance, dizziness and 2 left feet is a horrible feeling. Contracted covid Jan this year and the downhill spiral started and I was dragging my left leg as if I’d had a stroke . Being a 10 year breast cancer survivor and the slapped with another blow is unlucky and hard to swollow.

Hang on in there and seek comfort from family and friends. Tea and sympathy is no good, banter and cheek gives us something to laugh about and a wee spell off from the dreaded worry.

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Diagnoses tend to be slow in coming, and playing the Waiting Game is the worst thing ever. First of all, stay away from Dr. Google. Focus on forums like this and information from official MS organization websites.

IF it turns out that you have MS, it’s probable that it’s the relapsing-remitting variety, which means that you’ll have some bad spells mixed in with your normal everyday life.

Break down what you’ve been dealing with. Remove the abscess, the cold or pneumonia, and whatever’s related to Covid. What’s left are the issues you really have that could be MS. For now, see if your GP can help treat the individual symptoms or do whatever you can at home, like OTC pain killers or hot & cold compresses. From what I’ve learned on here (I’m from the US), it could be months before the NHS can fit you in.

it is quite possible, if this is MS, that what you are dealing with is considered a relapse. Whatever you do, don’t give up and throw away your future! If it turns out to be Relapsing-Remitting MS, it usually moves slowly for most of us. The medications that are available these days have proven very good at helping reduce future attacks.

Most of the people on here who are dealing with walking sticks, wheelchairs, or disability retirement have had MS for many years and didn’t have the option of taking drugs. In my case, I dealt with MS for more than 40 years before I had to quit work, and I still look after my own house and live a normal, if quiet, life. I went to trade school, raised a family, and still do my own yard work. I spent 35 of those years working full time at some rather active jobs, and while I did have to gradually make a few changes to my private life, in public no one knew there was anything wrong.

It takes time to absorb the new issues with your body, but keep working towards a complete diagnosis and don’t, under any circumstances, begin thinking that your life is over. It just might be a little different later on.

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Hello Random chap

It does sound as though your private consultant did what you paid for. The words ‘ suggestive of demyelinating disease’ certainly sound like MS. It’s as well he covered his back by mentioning other differential diagnoses, but saying it’s ‘possibly MS’ puts the wind up you alright.

Chances are it is MS. Or it’s ‘something else’. Regardless, as Norasmum said, consulting Google isn’t going to help.

If you want to do research into MS, look on this site (go to the :house: icon / MS Society Home), or the MS Trust or the NHS.

Also as Norasmum said, the chances are if it is MS, it would be the Relapsing Remitting variety. About 85% of people diagnosed with MS have that version. And the good thing about that is that there are many disease modifying drugs available to reduce the number and severity of relapses.

This in turn means that once diagnosed by the NHS, you can control the pattern of the disease. That wasn’t the case for many of us diagnosed many years ago, so lots of us here have various levels and types of disability.

Try to hold your nerve over the next few months. Yes, Covid has played he’ll with our NHS services so there may be a longish wait. What you could do is find out the name of the neurologist to whom you’ve been referred by asking your GP. Then phone their secretary and ask how long appointments are taking (or just phone the hospital and ask for the neurological admin/secretarial department). Sometimes you can get lucky (not like the song :musical_note:!) and get a cancellation!

You can carry on talking to us here, we will try to help with your worries and questions.

Sue

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Congratulations what a wonderful achievment for you. On a side note if you do have MS you do realise you got the achievement whilst you have had MS?

Secondly find out what neurologist you will be seeing as Sue said they may have private clinic, you can see them through that and still go back to NHS, it is what I did. Thirdly when i started my journey it took nearly 9 months for appointments to see neurologists. I kid you not.

Fourthly DO NOT GOOGLE lol.

Oh and number five, do not put the cart before the horse you wont be going anywhere. xxxx hugs xx

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My GP has been on the ball with referrals as it was initially thought that I had long covid, throughout this year my thyroid has kicked in and broken down, I’ve stuck to my guns and kept pushing as our thyroids don’t breakdown on their own. Many referrals and consultant appointments is now preparing a holistic approach for the Neurologist. Its been confirmed by stroke consultant that I have MS lesions and she’s requested my appointment be brought forward as my GP had already referred for a neurology appointment and at point of confirmation of lesions I was already 5 1/2 weeks into his list. Waiting list is 18 weeks in NHS Scotland… Appointment is 12th November (12 weeks in total) living with cancer your very alert when something is not right… having a direct line to a cancer team no matter how long it takes should you know the lights on and you need help is a bit of a bonus. If anyone uses Google to research ailments it can be a recipe for cooking up the worry storm. I’ve prepared a draft of every day symptoms from head to toe, a wee introduction to Neurologist on my persona and how I’m not a fan of orthodox medications and a list of questions I have… All this will help as advised by the team involved so far that the Dr will have some insight into the patient and 1st appointment won’t be fully overtaken by trying to start pieceing the jigsaw together.

Hello Sannimac

This thread is becoming very confused and confusing. You’ve added onto Randomusernames original post and it becomes hard to differentiate.

But I’ll give it a go - ie, answering your post(s).

You’ve got a whole pile of possible / probable conditions and complications.

From neurological symptoms, possibly leading to an MS diagnosis, to Covid (maybe long Covid?). Then there’s thyroid issues. You’ve said your ‘thyroid has kicked in and broken down’. What do you mean by this? Have you developed autoimmune thyroid disease? Either over or underactive? (These could be Graves Disease or Hashimotos - both are types of autoimmune disease and both can be developed by a person with MS. There’s quite a strong relationship between AI thyroid diseases and MS.)

A neurologist may be able to take as you suggest an ‘holistic approach’ to the entirety of your problems. But some would prefer to deal with your presumed MS (as diagnosed by the stroke consultant - who is quite capable I’m sure of diagnosing MS) and refer you on to appropriate specialists for other problems.

It’s certainly a good thing to have a list of your everyday symptoms to give the neurologist an introduction to yourself. Also a list of questions.

But starting out by saying you’re not ‘a fan of orthodox medications’ isn’t going to necessarily help matters. (In my opinion!) The neurologist might wonder why you’re seeing them if you don’t want the benefit of their experience and orthodox treatments. Most MS specialist neurologists see newly diagnosed people and want to start them on disease modifying drugs in order to reduce the number and severity of relapses. This is of course the orthodoxy today. If you prefer to treat MS with alternative therapies, diet and other means, the neurologist will of course be able to give you a definitive diagnosis, but then wonder what they can do to help.

Equally, treatment for thyroid disease is difficult without medication. If you have an overactive thyroid, your system would be fighting to control an over supply of adrenaline to your entire system. If underactive, an under supply of adrenaline.

You can imagine how complex this could all become if unregulated and whilst having MS relapses?

(I know about thyroid disease from having had Graves Disease - aka AI overactive thyroid, and subsequent underactive thyroid following surgery to correct Graves. I’ve also had MS for 25 years.)

Once you add MS and thyroid issues to potential Long Covid, there would be a difficult balance to sort out any of your symptoms.

I do feel very sympathetic to your long list of problems. And coming after breast cancer too, your situation is incredibly complex. I can see why you want to make future doctors aware of all your various issues and also to introduce yourself and your own perspective.

I suspect you might find that shutting the door completely on medication isn’t going to help the doctors to effectively treat you. Did you have the same perspective on orthodox medication when dealing with cancer?

Keep talking to us, perhaps start a new thread to more effectively concentrate on your issues?

Sue

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thank you, both for reading my post and for the congratulations :slight_smile:

I’ll give the GP’s a call mid-week (or pop in) and see if i can get anywhere. Thats a crazy amount of time to wait, was that pre-covid? :open_mouth:

Ha! i’m afraid i’ve already failed the fourth point. I’m an active doom scroller as my other half says, that combined with Reddit i’ve come across some truely terrifying stuff like end of life MS, ALS(?) etc which led of a few sleepless nights.

I think the hardest thing atm is playing the “is it MS, is it getting older, is it an injury game”. I’ve increased my Karate to three times a week atm so i keep active and get fitter come what may. I was reluctant to go this morning as my right thigh was really aching following Thursdays session and Idk what the root cause is. Odds are it’s karate, I remember when I started i’d come home and soak for ages to stop them aching, so it’s probably the additional training but the anxiety still comes up!

thanks for reading my post and replying Sue, appreciate it.

Thats not a bad shout. If i’ve not heard anything back by mid-week i’ll ring the GP and find out where i’m being referred, then find out what the wait time is. I can also check if they’ll request the MRI from Nuffield as if not i could get it myself and send it in ahead of time, if nothing else it might help them understand why i’ve been referred and where to go.

Hey, thanks for commenting, appreciate you taking the time to read my rant and sorry for the delay in responding. Went out with the other hald yesterday and tried to stay offline to have a break from doom scrolling.

thats really helpful advice, ahead of the appointment whenever that may be i’ll try to sit down with the Mrs and run through whats gone on since January, then filter out anything that seems irrelevant.

i’ve got to be honest i hated coming on here and mentioning mobility as a key frustration as i know it’s something so many people deal with. I guess in my case it’s one of the key things i’d be scared to lose as i’ve not had the most stable life and being able to get away or in some cases defend myself was the only saving grace. Thankfully thats long past but at the same time I know what i did go through and would be scared to lose my only way of escaping it…

it’s great to here that medicines come along way and that you’ve managed 40 years keeping active and maintain a fairly normal life even now. It brings me hope :slight_smile:

No hun back in 2006. I finally got diagnosed in 2016 lol. I suppose you could call it LONG MS lol. Its a waiting game for sure, when you think neurologists are rare they must have a huge work load its such a specialist field.

Glad your feeling a bit more upbeat looking at your answers. You mention you had battled stuff in the past. Believe me it may well be in the past but without us realising it well it can still creep back into the future.

Try not to be so hard on yourself. END OF LIFE MS, als, NOW thats a very long way away hun. my sisters MIL had MS from age 40, she died at 84 with MS and it was her diabetes that got her in the end.

You can keep healthy with or without MS. Lets say you dont have MS what would you be doing? so whatever it was or is keep doing it. you are a long way off from the end you havent really started yet, my first symptoms was 2000 i went blind temp in one eye and the rest is history, I am a 70 now, lost more people in the meantime from cancers, neglect and life. So i just keep moving forward the best way i can. xxx

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Wow you went along time without a diagnosis! Was it a relief when you finally found out?

thank you for your advice and support, it’s good to talk :slight_smile:

sort of i felt vindicated. i didnt think my family were taking me seriously enough and finally to have a diagnosis I could say what was going on, and it wasnt just age or grief etc. It didnt make any difference to my MS or how i was treated by doctors, as i have to say they were always there for me especally so my neurologist who told me he would get a diagnosis for me but progressive MS isnt easy to diagnose, it was a second VEP test that clinced it.