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Limboland

Hi all,

Like so many on here, I’m currently in limboland. Lots of problems for a long time, but loads of weird and wonderful (not actually wonderful!) symptoms recently, resulting in me being referred to neurology. Saw the consultant on Wednesday and he was very nice, listened to everything and did the physical exam. He said my reflexes etc were fine, but of course did loads of bloods and I’m now waiting for my brain & spinal cord MRI.

My question is, did anyone else get told at the physical exam that they didn’t think it was ms, but then the scans did indeed confirm it was?

Don’t get me wrong, I’m praying it’s not ms, but I have SO many symptoms. I do have fibromyalgia also and he said it could be this flaring up, but I’m not convinced. My brother had ms and sadly passed away a few years ago and my symptoms mirror his early symptoms so much.

Thank you for any advice or similar experiences

Hi, limboland ain’t a very good place to be. I’ve been in and out of it so often, I’d be invited to annual parties if there were any!

I’m sorry to read you lost your brother and fear your symptoms mirror his.

Let the neuro do his or her job and see how it goes hun.

Pollsx

Thank you for replying. I know you’re right, just need to wait and let the expert do his thing.

I was so relived when he said he didn’t think it was ms, we practically celebrated, but I fear it may have been a bit premature

Have you been diagnosed yourself or a medical mystery? I seem to have been a mystery for about 5 years having been referred to rhuematology countless times, pain clinic, so many meds I could start a chemist and now neurology! So we’ll see!

Can I ask also, do you know how long roughly you’re in the MRI scanner for brain and spinal with contrast. I’ve had lots in the past on varies bits of my body and I’m pretty claustrophobic but they’ve only lasted 15-20 minutes. Not sure whether I need to go armed with diazepam! I also saw on other messages about taking music in, can you take in phones or CD players? Don’t think I’ve been allowed in the past. Sorry if these seem trivial questions in the scheme of things!

Thank you x

Hi, I went for a brain MRI a few weeks back and they put a headset on me with the radio on :). It took about 15-20 minutes. I too was not keen but tried to switch off, keeping my eyes closed and listening to the radio. xx

Hi again. I was wrongly diagnosed with PPMS for about 8 years and suspected of it for a few years before that.

Then I was diagnosed with HSP…but that is unproven too! It has no cure nor treatment.

I’ve had 4 MRIs and the longest was for about 50 minutes​. Music is played via headphones if you want it.

I’m not bothered about being in the scanner. But I know some people find it difficult. If you think diazepam will help, them take some.

I hope it isn’t to long before you get your diagnosis.

Pollsx

Hi, I’m also in limbo land, it’s not a great place to be. I am now waiting to see MS Neurologist in 28 July, after seeing a Neurologist in October who said it was a different type of migraine, had CT scan which was clear. Should’ve been MRI but radiologist decided I didn’t warrant one! Then sent to ENT who did a hearing test as I had loss of hearing, tinnitus, wobbly walking and blurred vision. He sent me for MRI on 31 Jan 2017, after 4 weeks I rang for results, felt they had forgotten about me… then told I needed further MRI to look at a few things a bit closer, that was 3/3/17. Waited til 27/4/17 for results, such a long wait. Told I did not have any tumours but radiolist saw several white lesions, due to location believed to be MS. Have had relapse of old and now new symptoms which has left me anxious and low.

Saw my doctor who was very concerned and rang the hospital for an urgent appt to see MS Neurologist, which I’ve just received for 28/7/17! Another two months. So I fully understand the uncertainty and the wait! I’m struggling with work but can’t definitely tell them it’s MS only that it’s suspected.

The MRI process is fine, headphones and music, my first took 30 mins and second took 45 mins neither with enhancement. I think it’s the length of time it takes to get to the diagnosis which is the frustrating and anxious part. I know that even when I get to my appt I may need lumbar puncture so more waiting. So long as you don’t have a fear of confined spaces, I just closed my eyes, listened to the music and the radiologist checks you are ok during and explains any changes in noise etc…

Im learning (slowly) to try and be patient, not easy at all, it’s the one virtue I wasn’t born with!!! I’ve read up on what mimics MS symptoms so it’s a case of waiting to eliminate other things. It’s been nearly a year for me and I’m not formally diagnosed although due to second MRI it is believed to be MS along with the varying symptoms which I have almost daily… I can have a few clear days which are great then bam, it hits again…

Goodness Polls and Lou, sounds like you’ve both really been through it.

Polls - did you have the rash at all associated with HSP? How frustrating you’ve been misdiagnosed for so long. How are your symptoms? Are you on any meds?

Sorry you’re having to wait so long Lou. I hope you get to the bottom of it soon and that you’re not feeling too poorly in the meantime.

I was very lucky and managed to see the neurologist within a month of my gp suggesting ms as a possible cause. Before this time, ms never crossed my mind. I have hypermobility syndrome and it has such a wide range of symptoms, I put everything down to that. Then more recently told fibromyalgia, but again, didn’t think about ms and hadn’t even mentioned to the gp my brother had it. It’s only now when I look back at all my symptoms for the past 5/6 years and particularly recent symptoms, I think it could be ms. I’ve had so many X-rays, MRIs, CT scans in the past and always come back ok - but never the MRIs for this.

Like you say, patience is what I need. I have a brain MRI Friday and spinal with contrast at the end of June, so fingers crossed.

Hope you’re both ok and keep us posted Laura x