After three years still clueless

New diagnosis and before diagnosis
1

I’ve had some minor tingling since 36 I am now 39. In 2022 a very stressful cancer scare caused two days of odd symtpoms, feeling hot, sweating tingling, buzzing, headaches etc

My Dr said it was stress I was so bad I had an ambulance out. It cleared up, test results for cancer were negative.

Then two weeks after all my symptoms began

dizzyness since subsided,
tinnitus - permanent
electric shocks
mood swings
behaviour changes
feelings of grandeur
euphoria
headaches
neuropathic itching
pins and needles only happened once
digestive issues
excess flatulence to the point of frustration
muscle twitches
tremor in one finger
sleeping too much or not at all
nausea
forgetfulness, trouble working things out, unable to make decisions

There’s more too but that is an idea of what I suffer from

Nearly all come and go except tinnitus some never came back,

I had three neuros, a private GP all tell me there’s isn’t anything on three mris of brain and spine

My evoked potentials and somatoe potentials came back negative.

My brother has restless leg and dystonia which worries me but my Dr says that is unrelated to my issues

No chronic health or inherited illnesses in family I know of

I have had therapy and meds but made no real difference. I am in a better place but can’t help but feel this seems like MS

I haven’t had a lumbar and I am not recommend one unless they really feel something is wrong.

So I am FND and I’d except it if it wasnn’t for the the fact that I tingiling and shiver sensations two years before this.

So why is it if MS has lesions etc does it take years to get diagnsoed?

I am stil searching at one point I was fearing huntingtons disease due to psychiatric issues. It’s clear my brain is upset or not working right,

2

I think that the answer to your question is that brain lesions aren’t unique to MS - they can result from various and quite unrelated conditions including e.g concussion , infections that get into the brain.

For what it’s worth, and bearing in mind that I am just someone who has had MS for 18 plus years, the list of your symptoms don’t sound indicative, typical of MS.

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It takes years to diagnose MS for several reasons. One is the sheer length of time to get into an MRI machine and get the results back - in some regions this takes months. I read recently there is one NHS trust with no neurologists. At all.
It does sound like MS has been ruled out for you…three MRIs, three neuros…That’s really important to know. MS drugs are not something you want to be on if they won’t help you. And tingling sensations happen in so many medical conditions, not just MS.
I can imagine it must be very frustrating to keep having symptoms with no explanation. We expect doctors to come up with a diagnosis and it can be frustrating when they don’t. Does the FND suggestion give you at least some clues as to what you can do to help things?

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Hi
Sorry to read about your symptoms, I don’t think it sounds like MS, I am no expert and I have just been newly diagnosed with MS a few weeks back, but my symptoms started 2 years ago, when I lost control of my legs, and couldn’t walk, I was in A&E a few times, and the only reason I got a MRI scan quickly because they thought I could of had GB syndrome, as the inflammation in my body was so high. But I don’t know about other MS sufferers, as other people have different symptoms that others would not have, but I wish you well and I hope you get to the bottom of your illness.
LG

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I’m sorry you are having such horrible symptoms it’s not nice knowing something is wrong but not knowing what it is. I am diagnosed and have quite a few of those symptoms. My lesions well some of them are in the areas that affect mood and behaviour, my perimental health team think that these lesions have exacerbated by post natal depression for instance. I also have gastro issues, tinnitus, fine motor problems but I put my indecisiveness down to being a Libra :joy: take heart that they have ruled out MS I was convinced I had it three years ago and being proved right didn’t make me feel better. Don’t give up searching for answers make sure everything is ruled out first :blush:

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Ah I thought they were unique in shape and position. My MRIs I can’t fully remember but nothing stood out as obvious I personally have not seen them only at a Dr’s office. I am told lesions evolve over time they don’t just appear and if it was PPMS then I’d expect well something to be there. Symptom wise my whole body minus muscle issues seems to be on fire.

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thank you, I am FND but doesn’t make sense to me, I exhibit many MS symptoms but depending on who you ask on here, offline, online. Drs. I get. No that isn’t an MS symptom. Or yes it is, the problem is I am told PPMS is slow and tends to be mobility based I have no issues. I can walk I can run I never get tired and I never have fatigue. Which 90% do. So have I just not got fatigue yet or is this MS it is driving me nuts.

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MS is hard to pin down and symptoms are luck of the drawer as to where a lesion hits. Have they ruled out all other autoimmune disorders? The problem is if they’ve settled on FND they won’t really be looking elsewhere. I didn’t really suffer with fatigue until this latest relapse and it’s more than made up for it now :joy:

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Early days I guess, well years. First two neuros say fnd or zosert post virus issues.

The fact that my brother has issues too.

But he’s never progressed.

Mine are just odd my mris are clear at least my neuros say so and my recent nerve tests were negative.

So I’m still stuck in this limbo.

My new neuro is good, he listens and is willing to send me for tests.

Yeah if it was MS then I’m not sure if I’m ppms or what but I definetly had a, multiple body issues and it’d calmed some what but stress certainly amplified it.

A, long road to go.

They say fnd as my scans are clear but from my research MS isn’t always obvious. Lesions maybe so small to begin with.

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I think it depends on the neurologist, and seeing one who specialises in MS alone as they’ve a greater understanding. My first neurologist specialised in 5 different illnesses so didn’t take on board the brain stem lesion and I was diagnosed with MS ad hemiplegic migraine when in fact it was MS and Trigeminal neuralgia. I had a further 4 relapses in 9 months before changing neurologist and starting treatment on a high efficiency DMT before I lost the use of my legs. Stick with, and complain if you feel you’re right as you know your body. I was fortunate to be transferred to a MS specialist and once he saw my scans he changed the medication I could have. I’ve been fighting this fight for 2 years now and I can finally see the light at the end of the tunnel. So stay strong . X

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Thank you,

I have seen three, one who was a back of all tricks, one who is an MS specialist and the other is an MS and other specialsts. He is one of the leading neuros in HSCT. So he thinks there is soemthing wrong but my MRIs are all clear, it could be the scanner maybe it is the tinniest dots nothing on the scans that they can see.

My recent evoked potentials are clear as are my low limb tests.

However my symptoms are very much like MS and my brother has had simlar issues to me.

Like I have have an itch that never really stops for a year now, I had so many symtpoms when this began that it is hard to ignore them as being anything but MS. I am FND but that doesn’t make sense to me.

My limbs are fine my energy is fine but everything else is just not working or intermittent.

If all three are saying my scans are clear then I am not sure but I last had an MRI August 2023 and that is 3 of the brain and onw full spine.

However I hear MS can hide and actually some people don’t show anything clincial nor on tests for years.

Thank you it has been very hard on my young family and I left wrok for a year and whilst I am a managing now it is not easy

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I first had symptoms of numbness in 2020, then it was sporadic symptoms. Then 2023 it was loads of various different symptoms, food allergies, chronic reflux, constipation, dropping things, having falls, high blood pressure and episodes of supra ventricular tachycardia which now happens with certain foods and medications. This all came to a head in December 23 when I was admitted into hospital and they diagnosed MS, they also tested for Sjogren as well, as the nerve damage has affected my saliva glands, and given me dry eyes. If you feel the diagnosis isn’t right push for more answers.

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Trouble is my MRIs appear to be clear and my spine too but that doesn’t mean it couldn’t be MS as I hear it takes years and years. The abrupt symptoms I had followed by two weeks of feeling fine then it started again and accelerated ever since is alarming to me and I have some issues similar to you. At last count I have 20 symptoms but none affect my motor skills.

I itch and itch and itch around my buttocks and that was since an electric shock went down my back. I am convinced it is MS but which type I don’t know but I know I am struggling.

I also have unexplained spots that appear on my skin on the same place and disappear, I have swelling of the lips and eye lids with no know cause or allergies and it usually lasts a day so I can’t get it looked at. My toe nail is going thick underneath an discolored and this is all happening at once 2022 fast! I can’t get appointments becuase I am so sick in bed and can’t wake up before 10am it has hit me hard.

Migraines, digestive issues, acid reflux, cognitive disturbance, eyes blurring, tinnitus, rarely do I get numbness or tingling, ear goes deaf sometimes, emotional issues, can’t think, can’t concentrate, electric nerve pain, disinhibition, euphoria, anxiety. So many symptoms that come and go