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Really not sure what's going on - worried

Hi

I’m new to the forum, having pondered for months on whether to post or not - I must admit to feeling a bit like a fraud - but am confused and concerned, please be gentle with me.

I have serious Lumbar and sacral spinal problems including spondylolisthesis and stenosis severely limiting my mobility and causing great pain - that’s that out of the way - hopefully all will become clear later on how it is related (if you are still awake).

In September 2013, I was diagnosed with Fibromyalgia - I’m also coeliac and have regular B12 injections.

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MEMORY
I have an extraordinary capacity for retaining information and can pinpoint discussions and events down to specific days 10/20 + years ago - but my short term memory has always been a bit on the dippy side.

Lately however - there have been times when I’m really starting to think I’m losing the plot - putting things back in the wrong place, forgetting if I’ve locked my door or taken my medication within seconds - I do daft things like put crackers in the fridge and the butter in the cupboard.

LOSS OF SENSATION
A few months ago, I started getting loss of sensation on my right side from the waste down - it was unpleasant but given the state of my back, I just assumed that this was something I’d have to live with - until this started moving up started with tingiling into my stomach / ribs / shoulder / arm. I could still move them but no feeling.

My neck x-ray showed my cervical spine to be in good shape

In addition to the above, I get

  • Fatigue of unbearable proportions where sometimes I just MUST sleep - I feel lax or cramp when trying to get up (B12 jabs help a little but not massively)
  • Intermittent swallowing difficulties even with miniscule items such as small tablets (Endoscopy showed a sliding hiatus hernia)
  • Go through periods of dropping things
  • Muscle spasms in my lower and upper legs / feet / hands / abdomen / chest that will just keep going and going - you can see and feel the muscles twitching sometimes
  • Weird things happening with my eyes like stripey curly worms usually followed by a bad headache (this is very intermittent - but something I suffered from quite a lot a few years ago)
    • I also failed my visual field test three times in my left eye - I’m due to return for it to be redone next week

BRAIN MRI
I had a Brain MRI done a few months back which showed no demyelation but significant white hyperintensities of unknown cause considerably more than you would expect in someone of my age (? small vessel disease) - my cholestrol and lipds are at the higher end of normal and have been like that for years - thus unlikely to be the cause of what’s been found in my brain.

I am now waiting for a referral to a neurologist.

I guess my question are -

My GP made a connection of my symptoms with MS - but given the results of my brain scan - is it that straight-forward that it can be ruled out?

Are these symptoms typical of MS Sufferers?

TIA for any comments / thoughts - even if it telling me not to be so silly

Hello silky1

Welcome to the forum. Gentle is my middle name

Your worries regarding possible ms are quite valid considering what you have written. Of course, I am sure you know that your symptoms could also relate to the problems that you already have.

Hopefully when you see the neurologist things will become clearer but getting a neurological diagnosis of any kind can take some time.

You have come to the right place for support, so any worries, we are the right people to share them with

xx

Should have said some of your symptoms could relate to present spinal problems. Memory problems is something else!! My short term memory is atrocious…I have primary progressive ms

xx

Hi Silkie1, just a long shot, but reading your comments, have you been tested for underactive thyroid. I was diagnosed with this about 10 years after my ms. I thought at first that I was losing my marbles as I was so tired, I couldn’t wait to get to bed each night. It got progressively worse until I was falling asleep while talking to someone. I couldn’t concentrate on doing the simplest task. These symptoms may be something running alongside your other symptoms. I’d sit down and make a list of all your symptoms and see what have they all got in common. All of my ailments seem to point to a rubbish immune system. Hope you find out soon.

Thank you for taking the time to respond - Blossom - initially I assumed weird sensations and lack of feeling were tied in with my back problems so just accepted them - but they started to get more severe and frightening and can disappear for weeks as quickly as they appeared.

It was when the symptoms rose above the lower part of my lumbar spine it became clear that this wasn’t causing it - spinal problems can cause issues from the point of injury / deterioration down but not up - and the x-ray of my cervical spine showed it to be in pretty good condition - I also get horrendous pains in my shoulders which again can appear then disappear just as quickly - again, x-rays showed nothing (the pain is so horrendous at times I feel quite sick) - this has been put down to my Fibro which, although only diagnosed 16 or so months ago, I’ve clearly had for a lot longer.

Long Term Sufferer - historically my thyroid has been checked quite often because I also get severe eczema and dry skin and have a constant battle with my weight even when eating nothing - to date - the Thyroid results have never shown any indication for concern.

I have a blood test form which I’m hoping to get the blood draw tomorrow - my GP is exploring other options for the cramps; i’ll have a check what she is covering on this.

I fought like hell to get the doctors to listen to me that my back problems were “just” degeneration - they eventually discovered purely by chance that it is severely unstable - I can pinpoint the injury down to a day and rough time over 4 years ago, I still feel very angry about this. My new consultant was all set to operate - when they realised that I’m allergic to penicillin and erythromycin and have minimal capacity to fight infection - a scratch with a sterile needle caused a cellulitis attack that took 6 months to clear - I used to take a lot of steroids until I had Acute pancreatitis twice in 12 months.

I am so grateful I have a good GP who won’t automitically attribute my symptoms to Fibro or my back - but then in the same breath - I dread to think how much I’ve cost the NHS in the last 5/6 years :frowning:

Just checked my blood forms and yes, Thyroid function is one of many being tested - hoping to get in to get that done tomorrow morning - should have the results early next week

The one thing that I’ve really learned on my long journey is that you are the only person that knows your body best and that makes you an expert on yourself. If you think there’s something wrong, there is. Just a matter of finding the right person to find out what! Have faith in your own decisions. I used to think that I was imagining symptoms and even the people that are nearest and dearest really haven’t a clue what you’re going through. I don’t even tell my family all of the weird symptoms noe, they can’t do anything about it, so unless it impacts on them, I just moan to myself. I don’t want to be known for moaning all the time.

Hi, I am also progressive only diagnosed September but my short term memory is terrible, I started with pins and needles, well first symptom was floaters in my eyes, then balance became bad along with pins and needles/tingling.

After going to my gp for a year using walking aids he said I was fine, sure I was even A&E could tell I wasn’t changed gp January 2014 diagnosed September 2014 had it 2 years prior to that, I am doing ok but in a bad way right now.

Good luck x

Thank you all - I’m uncertain whether my mobility issues complicate things more - probably

The other thing I forgot to mention is the strange earthy smell I experience - I thought it was very real to start with but couldn’t Work out the source - eventually I realised the locations I could smell it were so random it just couldn’t be real

Alysea - I hope you get some relief soon

Thanks I am ok getting diagnosed was the main thing long road to it can be annoying so sorry it’s been along journey.

My GP told me three times it was vertigo and kept putting me on different motion sickness tablets to help me (they didn’t). A different GP told me there was nothing wrong with me at all despite walking about looking like I was on a ship at rough seas. The first GP passed me on to an ENT specialist with a six month waiting list, I decided to go private as I couldn’t wait that long, lucky I did as he referred me to a neurologist saying it wasn’t vertigo and then he (the neurologist) put me back on to the NHS as he clearly could see there was something wrong thank god. It was a long journey getting this diagnosis, a journey I’d wish upon absolutely nobody. Good luck with everything :slight_smile:

Hi Silky, I didn’t want to read and run. But I felt a similarity in the memory problems, i have to write down when i take any meds as I too can forget in a few seconds if Ive taken them and I now have a dosette box that I fill up once a week and then write down ive done it as I question myself so many times over whether Ive done it or not.

I hope the blood test goes well today, and maybe could even help shed some light on whats going on for you. x

Wow you have really been through the mill hun with all your spinal problems etc and Celiac which is horrible just on its own.

When I read your post you reminded me of my daughter who has fibromyalgia…all of your symptoms can be attributed to it.

The biggest problem with Fibroymaligia is it mimics so many other diseases like MS/LUPUS/ARTHRITIS so on and so forth so many symptoms overlap each other.

As to wavy worms in eyes etc, I BELIEVE that is ocular migraine. Headaches and migraine are very normal for fibromyalgia, and the migraine attacks can show on MRI…can affect your memory too. (NB: I hope you meant wavy lines not worms lol now thats a different thing lol). x

BACKGROUND:

Patients with migraine are at an increased risk for white matter lesions, typically multiple, small, punctate hyperintensities in the deep or periventricular white matter, best observed on magnetic resonance imaging utilizing T2-weighted or FLAIR sequences. The underlying pathogenesis of white matter lesions in migraineurs is unknown, and the lesions are usually nonspecific and of unclear clinical significance.

,

So to answer your question:

Are these symptoms typical of MS Sufferers? Yes, because they are so alike.

A thorough neurologic examination can assist in differentiating fibromyalgia from other neurologic disease so its good you have been referred to see a neurologist. My daughter did she even had white matter lesions on her MRI but failed all her neuro exams etc. She is actually much better at the moment as she found doing things helps her more and she is even riding again. Yes she still has bad days because her disease over laps with M.E. as she gets chronic fatigue but i have seen a big change in her thank god.

Good luck with your nuero appointment. I hope things become more clear for you, but i wanted to try and put your mind to rest as your symptoms are the same as my daughters to a T. xx

Thank you so much Goldengirl63 - it has been a rough few years - during that time, we lost my dad to Pancreatitis (which I’ve since had twice - and I don’t even drink - my sister has also been battling breast cancer for the last 6 years

the Background you posted does match the white hyperintensities in my brain - it’s interesting - I get a lot of headaches - but touch wood not too many migraines (I’m unbearable on the rare occasions I do get them)

I did however have a lot of tests done about 28 years ago which coincided with me getting hit by a moving train (don’t ask!!!) - I started having what I now know to be panic attacks - the tests were done in St Barts in London, they advised that I was getting migraine symptoms without the headaches which all seemed a bit strange - I never really gave it a second thought.

My OH is marvellous in the main - but has always taken the mickey out of me about my headaches and “moving pains” convinced I’m putting it on - even now he simply cannot sympathise with Fibro and fails to even try and understand it - atm I’m still somehow managing to work (from home) but with stranger and stranger symptoms occurring - the hardest part is being in limbo :frowning:

Repeat field vision and blood tests this week (I didn’t get there Friday - another weakness of mine - motivation for going anywhere - I hate being pretty much a prisoner - but the effort required to get out is just way too much for me a lot of the time :frowning:

Gosh hun you have really been through the mill hun, i am amazed you can still sound like your smiling lol.

Fibro is an awful misunderstood disease. I knowo of people on MORPHINE with fibro. Your husband should really read up on it. There are so many parts to it and it can affect so many things, even give you insomnia, IBS, all kinds of things.

Perhaps you might benefit from a forum dedicated to FMS. I have sent you a link via message to the one my daughter is on.

P.S. they now think fibro is caused through the brain not switching off pain signals…so its all changing and i think in a year or two they will give it a new name.

Hugs. xx

Thanks Goldengirl63 - going to check it out ; I tried MST for my back but really didn’t get on with it - I know codeine and other opioids “convert” to morphine in the body - but I am convinced that many medicinal morphine preps are just “too pure” for a lot of patients to tolerate - IV it sends me away with the fairies but does nothing for the pain.

I take a right little cocktail of meds with buprenorphine for breakthrough pain - there was once a time when it was hoped the patches would form my base pain meds - but my eczema decided otherwise grrrr

I love this forum. You guys are great and so supportive with your advice

Good luck Silky1

((((((hugs))))))

I’m also fairly new to this Forum. Having had the worst twelve months as far as symptoms go, I was finally referred to a Neuro in Nov. Had my first appointment on New Years Eve! Which lasted all of 10 minutes. He was very dismissive but is sending me for an MRI , which is on the 12th. I have decided to write on here as I don’t want friends and family getting fed up of me moaning about stiffness, pain, tingling, fatigue. I need to chat with people who know what am going through :frowning:

Yes the obligatory 10 minutes lol…

OK my advise to all newbies is. Sit down and think hard when did the symptoms start and what were you doing…you would be amazed what you will remember. All these things can be clues…

Then start a journal like a diary…

So just say you had a really stressful day on Monday and it made your symptoms worse, or you ate a certain thing and it made them worse etc and so on…

The thing is with a neurological disease like MS and others that mimic it, the symptoms can be many so its a good idea to try and put them collectively in departments.

So pins and needles — tingling — fizzing ---- sharp nerve pains…tickling, burnong can be what is called as Paresthesia to do with nerve signals going wonky lol…So if you write them all down it looks loads but it could just be one nerve pathway that is playing up.

So you can say you have nerve pain.

Headache

Insomnia

IBS

stiffness

fatigue.

Once you start to write it down it can all start to make sense.

The trouble is with google if you write down tingling, burning, fizzing, fatigue, it an bring you to MS but there are a whole lot of other things it can be…unfortunatley.

Thats why i always say write down when it started what you were doing and how it effects you, and i bet you will see a pattern emerging…

Dont be dismissed though, as perhaps it isnt neurological but like i said there are lots of other things it can be.

Big hugs, to all the limbo landers out there its no fun believe me a lot of people prior to being diagnosed where in the same place…and sadly a lot of them are still there. xxx

Thank you all and thank you again Goldengirl63 for your useful guidance - I’m not the greatest with pen and paper - but will set up a spreadsheet so I can try and keep a track of what is happening when.

I was at my GP’s on Monday after discovering badly swollen lymph nodes of no obvious cause - my blood tests didn’t show up anything that could possibly be related to either the cramps or lymph nodes - after some discussion, we agreed to wait a couple of weeks and then request an ultra sound if they don’t settle down, because whilst I noticed them Sunday - I have no idea when they started

One of the reasons I don’t remember exactly when the numbness attacks started is because initially - they were below my lumbar spine only - so figured that this was somehow the cause - it’s only when it started travelling upwards that I figured it clearly couldn’t be tied into my Lumbar ./ Sacral.

Off to set up an electronic diary