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Anyone been eventually diagnosed after years of normal/negative tests?

Hi everyone

I won’t go into the long, complicated and, frankly, quite boring history of my medical issues over the years (I’m sure some of you will already have been bored by them in other threads on here over the past few months!).

I will just cut to the chase…

Has anyone eventually been diagnosed with MS after a significant amount of time and tests coming back clear/negative for MS?

I have a collection of diagnoses, none of which fit in with my pattern of symptoms. My symptoms are typical MS symptoms and do tend to follow a relapsing/remitting pattern with certain things never going away.

I’ve had LP (clear), EP (normal), MRI of brain (‘non-specific’ multiple white matter lesions), MRI of cervical and thoracic spine (no visible lesions/inflammation). This has led to a “working diagnosis” of vestibular decompensation as my most debilitating and constant symptom is that of a feeling of imbalance/vertigo that never goes away and effects every second of my life.

However, I also had some tests at a balance clinic, which showed up some signs of definite CNS issues. My Neuro had not seen the report from these tests when I Iast saw him and received the “working diagnosis”. The guy at the balance clinic keeps talking about MS in the light of his finding and is hinting that my brain MRI should be looked at again, bearing in mind what he has found with his testing. He has re-sent his report with a note attached asking my Neuro to look specifically at the bits he is concerned about, but I’m not holding my breath that the Neuro will act upon it!

I thought the MS thing had been put to bed, but this guy keeps on about it and says my results were what he would expect to find in someone with MS or a brain tumour (he has ruled out the tumour theory because this would have shown up on the MRI).

I was just wondering if anyone had had normal results but gone on later to be dx? My head is just all over the place at the moment.

Sorry for rambling…once I started I couldn’t stop!!!

I am in a similar position. I recently went to a gait laboratory and the response was the same, the consultant can’t believe that to date my mri’s have been clear. I am still waiting for the report from the gait laboratory, to read what actually was reported. This is being chased up for me on Monday.I have ben referred back to a general neurologist. Apparently, the one that said he would be happy to see me again was a locum and has now left. My appointment is not until end of July. I will let you know the outcome, as soon as I am seen again. I will watch this thread though with interest. I had my rant yesterday, Lou x

There are rare conditions that cause neuro problems that look like MS but are not. They have clear MRIs LPs etc.

Please look at the post ‘Question for Anita’ and the every day living forum.

. MS is usually thought of first by doctors as it is more common than the other conditions.

Moyna xxx

There are rare conditions that cause neuro problems that look like MS but are not. They have clear MRIs LPs etc.

Please look at the post ‘Question for Anita’ and the every day living forum.

. MS is usually thought of first by doctors as it is more common than the other conditions.

Moyna xxx

Hi Purpledot,

MS is a very difficult illness to diagnose. In my case I first went to the doctors in Dec 2010 complaining of a stabbing pain behind my right eye which spread to my left eye then spread upwards and started a pulsing headache then grew into a migraine.

The doctor ignored everything relating to the pain in my eye and treated me for migraine but for two year afterwards I was having extreme pain and headaches on a daily basis.

Blood tests came back normal for years then I was told by the doctor to have my eyes checked. I went to spectators and there they notified something not right with my right eye. They sent me to hospital as an emergency case where I was diagnosed with intermediate uveitis. This is is over two years from original complaint.

Uveitis is an autoimmune disease which is only part of a bigger problem so the hospital had to search this was Feb 2013.

The problem is they is a lot of other illnesses that mimic Ms and the hospital have to eliminate each one and there is over 100.

I just received my diagnosis of Ms only 2 weeks ago. As you see it all takes time just hang in there and hopefully it will all come good in the end.

Good luck purportedly hope you get your diagnosis soon.

Robert x.

Hi Purpledot,

MS is a very difficult illness to diagnose. In my case I first went to the doctors in Dec 2010 complaining of a stabbing pain behind my right eye which spread to my left eye then spread upwards and started a pulsing headache then grew into a migraine.

The doctor ignored everything relating to the pain in my eye and treated me for migraine but for two year afterwards I was having extreme pain and headaches on a daily basis.

Blood tests came back normal for years then I was told by the doctor to have my eyes checked. I went to spectators and there they notified something not right with my right eye. They sent me to hospital as an emergency case where I was diagnosed with intermediate uveitis. This is is over two years from original complaint.

Uveitis is an autoimmune disease which is only part of a bigger problem so the hospital had to search this was Feb 2013.

The problem is they is a lot of other illnesses that mimic Ms and the hospital have to eliminate each one and there is over 100.

I just received my diagnosis of Ms only 2 weeks ago. As you see it all takes time just hang in there and hopefully it will all come good in the end.

Good luck purportedly hope you get your diagnosis soon.

Robert x.

Sorry purpledot,

I’ve got problems with predictive texting. I will get this sorted out soon. Sorry it said purportedly instead of purpledot.

Regards

Robert.

Sorry purpledot,

I’ve got problems with predictive texting. I will get this sorted out soon. Sorry it said purportedly instead of purpledot.

Regards

Robert.

Thanks for your replies everyone.

Robert - I was really interested to read about your eye pain, as I have had a niggly sharp/stabbing pain in my right eye since last April when I had 3 weeks of blurred vision in part of that eye.

I now have this pain at least once a day, and it can sometimes last for days on end, when it usually develops into a more general headache and pains in the right side of my face.

I have been to an optician, but they said my eyes seem perfectly healthy. I am thinking of going again.

I am very lucky that the guy at the balance clinic seems to be on my side, and I also have a physio who is wonderful and will always fight my corner, and agrees that there is something else going on other than the vestibular issues.

I am not giving up. I know there is something wrong with me. I have just been tested for Lyme Disease (at my suggestion) but am not holding my breath for a positive result as the initial tests are notorious for giving false negatives.

I would never have believed that it could be so difficult to get medical issues diagnosed and treated in this day and age. It is so exhausting and frustrating.

Hugs to everyone who is still fighting for answers xxx

Hi all, I am sorry purpledot, but I don’t have any answers to your original question, but I do sympathise with the vertigo. I had a bout of it a month ago and it only lasted 2 weeks, but it was hell, I can’t imagine what it must be like for you having it for so long. I also wanted to know more about the eye pain Robert mentioned. I was diagnosed with optic neuritis last December and waiting to find out if MS is the cause, but I am wondering whether It really was ON. The main reason for this is if you read about it the literature says the pain lasts only for about 2 weeks before the vision problems, but like you I get the pain behind my eye at some point most days only for short periods of time, and also the soreness on movement flares up occasionally. Hoping they have got it all wrong and MS not on the cards… I really hope you find your answers purpledot, Leah :slight_smile:

Just as a little addendum to this thread…

Saw an endocrinologst today as I have nodules on my thyroid (one of which has grown significantly over thelast 6 months so had to have a biopsy done there and then…eek!).

Anyway, he has always been interested in everything else that is going on with me and when I told him of my “working” diagnosis, he said “A young lady like you should not be walking in here on 2 crutches with no proper diagnosis and no proper help from anyone”. He has written to my GP to tell him to refer me to the nearest Lyme Disease specialist (I told him I’d asked to be tested for this) and he also said “Hmmm…perhaps it’s time for you to talk to your GP about getting another opinion. I’m just sowing a seed, but it’s worth thinking about”.

He’s such a lovely man…I wish he was my Neuro, or even my GP!!!

Anyway, I am now determined not to give up, and will ask my GP for another opinion. Gosh, this is so confusing, frustrating and exhausting…