So frustrated and fed up :-/

New diagnosis and before diagnosis
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Hi everyone,

Feeling very frustrated at the moment as don’t seem to be getting anywhere with finding out what is the matter with me. Thought maybe someone on here could help or advise. Sorry if I am a bit ploppy. Promise to slap myself with a wet lettuce afterwards… :slight_smile:

Was diagnosed with ME in mid 20s but symptoms for only a few months then okay again. Left with ongoing leg problems and occasional periods of fatigue afterwards. Legs would throb, ache, burn. I put up with it like that for years as no GP seemed interested.

Last year, at 45, began to deteriorate. Leg problem became much worse and began to affect my arms too. Also blurred vision, bladder problems, unsteady on feet, tingling in fingers and difficulty with fine movements in hands sometimes. Also, absolutely wiped out with fatigue.

Was referred to neurologist in December. Saw her eventually in June. She thought ME diagnosis in 20s probably not correct. Possible MS. Referred for MRI which I had about 6 weeks ago.

Symptoms have not gone away since deterioration last year. Some days better than others but generally feel awful. Had to give up my business in July as just couldn’t manage. Legs and arms keep me awake most of night, despite being prescribed Amitriptyline, wearing tubigrip, pillow under legs etc. Tens machine did nothing. I continue to have trouble with hands, balance and bladder.

Today I had a copy in the post of the neurologist’s letter to my GP, outlining the MRI result. (Had brain and spine, contrast and non contrast.) And now I’m really confused… :-/

It says, ’ MRI was normal. Single high signal lesion in posterior aspect of corpus callousness which was reported as non specific and therefore does not indicate any significant underlying pathology. MRI whole spine was normal apart from mild neuro degenerative changes.This is reassuring. I will keep her under routine follow up.’

So I actually have a lesion, and symptoms suggestive of neuro condition plus previous episode in 20s, degenerating health since end last year, but the report says normal and suggests they are just going to keep a bit of an eye on me for a while and there we are…

I am due to see the neurologist again towards end of month, and it seems I’m going to be told everything is fine. Sat here in tears as had 2 hours sleep last night due to muscle burns and pains, currently no income as haven’t been able to work , no diagnosis, medication doesn’t work and seemingly no further forward at all… It is affecting my whole life just now. I have a 10 year old son, single mum and I’m like a hobbling 93 year old :-/ So frustrating.

Does anyone else have any experience of a similar MRI result and symptoms ? Any thoughts on what could be the matter with me? What to ask for at neuro appt? Beginning to think it must all be in my head or that I will never find out why this is happening. Any advice much appreciated. And sorry if I’ve been a moaning Minnie! Off to find wet lettuce for face slapping straight away… :slight_smile:

Kat

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I really feel for you Kat. It must be very frustrating to have such pain and affected like you are, and no diagnosis. Have you ever been referred to a rheumatologist? Everything you mention, even down to the ME diagnosis, can also be associated with Fibromyalgia. It seems so many of these “invisible” illnesses have overlapping symptoms. Maybe ask your gp to refer you.

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Hi kat, like Poppy I also feel for you.

All these things that are going on must be caused by something neurological! I dont believe it is all your head.

I had all kinds of symptoms, like foot drop, which led to dragging the whole leg. It felt like wood. So in an effort not to trip or fall, I would hitch my left hip up and kind of swing the leg out. It was knackering and caused terribly painful inflammation in my hip. But I still fell!

Once my mobility problems started, they progressed and never went away. I also suffered bladder and bowel accidents, arm spasms, fatigue and felt rotten!

I was referred by my GP to neurology and saw neuros every 6 months. I had 4 MRIs, 2 lumber punctures, 2 EMG test, plus a variety of other tests, including so much poking, prodding and pin pricking that I felt like a pin cushion!

None of my tests ever pointed to MS, nor anything else!

So some 12 years later, I was diagnosed with HSP…hereditary spastic paraparesis. But even that hadnt been proved yet…they`ve just run out of ideas!

Now, back to you…you are seeing a neuro this month, so my advice is write down a list of your symptoms, questions and take someone with you. When we are tired, flustered, nervous etc, we can easily forget or mishear what is being said.

Good luck darlin!

luv Pollx

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Hi Kat

Why does a neurologist send you a copy of results like that? (I do know it’s a requirement now when writing to your GP, but still… It does absolutely nothing for you, explains nothing, and just makes you even more anxious.)

So your stress level has now been ramped right up, you’re probably sleeping worse now than you were, and you’re expecting to be told absolutely nothing at your appointment.

To be honest, the only, and best advice is what Poll’s told you. Start writing down your daily symptoms, note when you have particular symptoms and if there’s any relief through the day or night. You’re not going to get your neurologist to go through the whole of a couple of weeks of symptoms, so, once you are clear on exactly what symptoms you’ve got, when they began, how it affects you, etc, you can write yourself a short list of what is wrong.

You’ve said medication doesn’t work, you need to be clear about what you’ve tried and what you haven’t. For example, Amitriptyline is good for burning type pain, it also helps with sleeping, so you could ask your GP if you could have a prescription for that (if you’ve not tried it before).

If you are really clear about what you’re living with, ie all of your symptoms, plus what you’ve tried to help with the symptoms, you can go to your neuro appointment fully armed.

It may be that you don’t have MS, but what you do have is a whole load of symptoms that aren’t totally dissimilar, so you need to be clear with the doctors that you need to figure out exactly what’s going wrong. So get your questions organised too, write them down, and don’t worry about referring to your notes during your appointment. I refer to notes at every medical appointment I have. You don’t want to leave the appointment with questions unasked and unanswered.

Sue

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Sorry Kat. I was saying “it must be Fibro” nor did I mean to give that impression, but hubby has had Fibro for ten years and his symptoms are all of the above. They just struck a chord with me. Anyway, write your bullet point list of questions for your next appoinment and I hope you get some answers soon. :slight_smile:

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Thank you so much for all your replies. It really helps to discuss things with people who have similar experiences. As I’m sure some of you will know, it isn’t easy to describe it to people who haven’t experienced it. Invisible illness :-/

i will do as you say and write things down ahead of the appt. And yes, I agree Ssssue. The letter really hasn’t helped as it seems to be saying mixed messages.

Thank you once again. Really appreciated :slight_smile: xx

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Deep breath.

I had first symptom of sometime in 1981, everyday would wake up with dead left arm, and pins and needles, doctor said pack up smoking even though i was only smoking 5 a day.

Moving on, 10 years it took to get a diagnosis. I had worse MRI results then your first one lol. I paid for it too. I had it in 2006 October. It said large cluster of high signal foci in the deep white matter of my brain… result by radiologist was: This could be demylinating event but due to the fact the patient was born 1951 I feel this is more aged related… end of fact…

I had so many MRI, when i read all my letters, I actually found THREE lesions in my spine in different areas, over several years. One letter i got off my neuro said SURPRISE surprise, we found a lesion on your (cant remember where it was now lol)… Then on one meeting with him, he told me he had seen a large lesion on my spinal cord but the radiologist believed it was an ORB on the film… but my neuro believed it was a lesion.

The neurologist i believe doesnt actually interpret the results the radiologist does, and some neuros just take their word for it.

Any high signal foci, has a reason even if they say non specific, that is the age old cop out, like the drugs now they have to tell you every thing that might happen to you if you take them, so if they find high signal in your brain, and no other supporting data they say non specific, but what your neuro has done is what mine did, he said he would keep an eye on me, and bless him he did. He stuck with me for 10 years and we finally got a diagnosis this year in February because of another VEP test which showed brain slowing left side again.

IF you do have MS it will show itself eventually. So dont get too down over it, its very hard to diagnose unless you are totally classic (i was though 2000 went blind but hey according to my doctor at the time it was normal lol).

I would also ask about Fibromyalgia. My daughter has it, and it does affect both sides of the body and can include a form of muscle burning etc and yes pain. Its hard to sleep with Fibromyalgia. It also has relapses too.

Dont give up though.

If you write down stuff only do the major things thats what my neuro told me to do. I even drew a body on computer and labelled the areas which affected me, and gave it too him, he thought it was fab, and said he could see straight away it was all left sided, it has been from the day i first saw him, to the wet feet, cold freezing feet, lack of sensation from knee down etc…its never really changed just got me more and more disabled.

You will get answers, but you have to keep strong. Keep ranting lol…and yes you have permission to go insane now and then, but if it is MS it will show itself one day.

Oh also look up LYMES… xxxxxxxxxxxxxxxx

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I wasn’t saying!!
Is there ever going to be an Edit button here?