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3 short questions please

Hi all. I wonder if u would be so kind as to answer me tgese three questions? 1. How long from having your first neuro symptoms did you get diagnosed? 2. Have you always had positive brain scans and lp’s? 3. Have you been diagnosed with fybromyalgia too? 4. Have you needed to request a second opinion to gain.a diagnosis? Oops thats 4 questions. I really hope you guys can help me out here. Im back in limbo land and ive found myself returning here and at the moment i need these questions answered to help me best thanks in anticipation mandymoo :slight_smile:

Hi,

Simple questions, but maybe not so simple answers…

  1. From first consultation with a neuro, about eight months. BUT, from first having symptoms at all - which I only realise with hindsight must have been the start of it - I estimate years. Not really the NHS’s fault - mostly I ignored early symptoms, as I didn’t think they were anything sinister.
  2. Bearing in mind what I said above, about possibly having had it years before even seeing a neuro, then yes, always positive scans - i.e. very first scan, they saw something. Never had LP, so don’t know what it would have said. Not essential to diagnosis anyway.
  3. No, not diagnosed with anything else.
  4. Yes and no. I’ve never requested a second opinion, as such. But at least three or four years before diagnosis, I was referred to Rheumatology, where a very astute young rheumy DID believe something was wrong and suspected a form of sero-negative arthritis (one that doesn’t show in the blood). However, he left, and his successor discharged me, with a diagnosis of “wear and tear”. Told me I was a bit young for it, but: “Some people are just like that!” So I convinced myself if it was anything serious, they wouldn’t have discharged me, and went home and tried to forget all about it. Four years and several “minor” episodes later, roll on to the morning I wake up unable to feel my feet! Only at that point do I get sent to a neuro. So I suppose I have had two opinions - eventually - without having to ask. But the first was completely the wrong field. Again, I can’t really blame the NHS. My early symptoms were not classically neurological - more like aches and pains. So Rheumatology wasn’t a bad or unreasonable guess - just didn’t turn out to hold the answers.

I don’t know if a survey of this kind will really help you, though. They are “How long is a piece of string?” kind of questions, and I suspect you’ll get as many different answers as you get replies. How will it help YOU decide what to do?

Tina

Sorry, I tried to be clever and use the automatic list numbering - which looked fine in the edit window, but evidently fails as soon as you hit “Post”.

It’s ended up with no formatting and pretty hard to read now.

T.

x

Hi Mandy, I am not dx yet. For me my first symptoms started 2 years ago when i lost sensation and strength ib my lower left leg and foot. However as I had just had spinal surgery it was assumed that it was caused by nerve damahe from the op and wasn’t inbestigated any further, it was “just one of those things”. only in the last few months has it been considered a neuroligical problw when a different Neuro surgeon did investigations and was catagorically able to show that this wasn’t the case. It was he who arranged a brain scan and because of what he was on there referred me to a Consultant neurologist. However, prior to to that (maybe 5 years or more) i had beene xperiencing some other symptoms that were fairly subtle and that i assumed were a combination of reaction to pain killers and early menopause. A month ago my brain scan revealed 7 lesions on my brain and a couple of weeks prior to that i had an “episode” where O collapsed at work with extreme fatigue, loss of feeling in both legs, very blurred vision, dizzyness and confusion. Since that episode all of these symptoms got worse and more persistant and my leg and foot got much worse and i have quite a problem with mobility now. However despite all of that the consultant neaurologist dismissed my symptoms as "depression2 and sent me away with a prescription for anti-depressants. Of cours nothing improved and now my GP has recommended a 2nd opinion and has referred me to a different Neuro consultant. The only tests i have had is nerve conduction, Braim MRi, inner ear examination and eye test, no LP or EMG. I was really unsure and afraid of seeking a 2nd opinion as i didn’t want to be thought of as a paranoid hypochondriac, but the GP and my private health Ins company were very supportive and felt it was the right thing to do. One thing I have learnt since joining this site is that diagnosis can take a very long time (years in some cases) and that MS and other neuro conditions can be very difficult to diagnose. It seems there is a very stricy criteria for diagnosis and however obvious symptoms are, if the brain and spine MRI, and Lp results are not definitive enough then they won’t actually diagnose MS, even it’s fairly obvious. It took me a while to get my head around the fact that a diagnosis could be a long time coming and I really struggled at first with being in “limbo”. I have got my head around this now and know that I will just have to wait and see. However i would say to anyone, don’t be put off seeking a 2nd opinion, you have every right to the best care and to be taken seriously. I am going to ask about Fibromyalgia too because this is something my mum had so makes it more possible that i could have this too. It looks to me like a high percenatage of users on this board are in limbo, so you are not alone. Good luck with it all. trudy xx

Hello Mandy, 1. My first neurological symptoms appeared in 2006, I was diagnosed in February this year. 2. I was diagnosed from my first MRI and this was brain and spine. No LP for diagnosis but he still wants me to have one! 3. I haven’t been diagnosed with anything else but (this leads me to question 4) 4. I was referred to an ME centre to be assessed by their Physio, she agreed that my symptoms needed checking out by a Neuro. I went back to GP and he referred me to Neuro. I have a long history that I won’t bore you with but it was an awful time and I really should have pushed more when I was younger but I’m not a pushy or assertive type of person. I hope you get the help you need, limbo is an upsetting place to be, even though I got diagnosed pretty quickly from first consult the years before that is the time I really consider limbo. Sam x

Hi

  1. First symptoms in Dec 2008, diagnosed April 2009.

  2. Yes, brain MRI Dec 2008 showed lesions, also positive LP. Spinal MRI March 2009 again showed lesions.

  3. I had existing conditions which are irrelevant as far as neuro is concerned. However, my migraines only began when I turned 40 and I believe there could be a connection as my migraines tend to flare up when the MS does too. I feel it is too coincidental and there does seem to be a high incidence of MSers who also suffer from migraines.

  4. Didn’t need a second opinion as my diagnosis was very quick (and also came as a huge shock).

My symptoms were very severe for both a first and second relapse so there was no option for my GP or neurologist to play them down as anything other than neurological. In a way I suppose that makes me lucky as it led to a quick diagnosis and I qualified for DMDs straightaway too.

IF you have MS, at some point the evidence will be hard for the neurologist to ignore. It may mean that you have to play the waiting game until you have some very severe symptoms that cannot be explained away as something else or you can push for a second opinion. That is something that only you can decide.

Good luck

Tracey

Hi First started getting symptoms in around June 2010 pins and needles balance and eye problems and buzzing in legs when bending forward - l’hermittes. Was finally referred by gp to neuro in dec 2010. Neuro is great - my hubby also sees him as he has Parkinson’s. had MRI of brain and spine with some inflammation on brain but did not fit criteria for diagnosis. Had LP which was described as unequivocal only 1 oliclonal band. Neuro continued to follow me up as symptoms persisted and was finally diagnosed in Feb of this year. Although I was not surprised it was a great shock at the same time but also a sense of relief that I knew what was causing the problems. Limbo is a really hard place to be in so keep pushing for answers. Interestingly it was suggested that I may have fibromyalgia over the years. I have never needed to ask for 2nd opinion as I have been in the very lucky position of getting great care. Hope you do too take care. Kind regards.

Hi First started getting symptoms in around June 2010 pins and needles balance and eye problems and buzzing in legs when bending forward - l’hermittes. Was finally referred by gp to neuro in dec 2010. Neuro is great - my hubby also sees him as he has Parkinson’s. had MRI of brain and spine with some inflammation on brain but did not fit criteria for diagnosis. Had LP which was described as unequivocal only 1 oliclonal band. Neuro continued to follow me up as symptoms persisted and was finally diagnosed in Feb of this year. Although I was not surprised it was a great shock at the same time but also a sense of relief that I knew what was causing the problems. Limbo is a really hard place to be in so keep pushing for answers. Interestingly it was suggested that I may have fibromyalgia over the years. I have never needed to ask for 2nd opinion as I have been in the very lucky position of getting great care. Hope you do too take care. Kind regards.

Hi there

I first started symptoms in 1991 (after radiation treatment for hodgkins lymphoma) with l’hermittes. I had all the tests, full MRI, LP and VEPS etc. All were negative so the l’hermittes was blamed on the radiation treatment.

Roll on to 2005 I had numbness on left forearm. I had MRI (brain and neck) and all was clear. Numbness went.

2008 had attack - exhaustion numbness down left side of body and jelly weak legs especially on right. GP said it was a virus no need to go to neuro as scan was clear in 2005.

2009 started to feel tight calf leading after exercise to drop foot. GP said no drop foot. DX with anxiety.

2011 made private appointment with neuro (GP would not refer me to NHS). I had MRI and a cervical lesion was seen. Brain MRI was clear and so was LP. Neuro dx delayed radiation myelopathy.

2012 GP referred me to NHS and saw a new neuro. This one thought that I had benign MS (since 1991) and now have gone into SPMS. Had another MRI and LP. LP was still negative and MRI still only showed the one lesion in neck. He could not DX me with MS (not enough criteria) and he thinks the radiation myelopathy is impossible.

2013 I had another MRI last week and see neuro next week for results. I have had all the blood tests and no other possibilities have been mentioned to me.

So to sum it up symptoms since 1991, 3 clear LPs, 2 clear MRIs, 2MRIs with one lesion - and I am still none the wiser but as time goes on I think a mistake was made in 1991 when I had the radiation treatment.

Moyna xxx

Hi Mandymoo - you probably already know my story but anyhow I’ll answer your questions in case you’ve forgotten:

  1. Symptoms started officially Oct 2011 - but I suspect the neck spasm, leg stiffness and itching were symptoms that I just hadn’t worried or thought could be related at the time. I am not officially diagnosed still - just possible MS.

2.I’ve had 2 brain scans (brain &spine then just brain) - both showed a non-specific brain lesion therefore not conclusive whether it was MS or not. No LP’s but that was because I decided not to have one at this point as having one would only have changed the diagnosis from possible to probable and no access to DMD’s.

3.No one’s ever suggested fibromyalgia. I can only hypothesise that this is because I suddenly out of the blue developed pins and needles, bladdes, bowel and leg issues - I could be wrong.

4.I did go for a second opinion as my first MS specialist (it was just chance that I got booked to see an MS spedcialist as it fwas a recommendation by another consultant I work with). Anyway he thought I’d had an ‘episode of spinal inflammation’ but said he didn’t think it was MS but couldn’t say it wasn’t. He was an absolute ass and didn’t help when I was struggling with symptoms and had new symptoms so got referred elsewhere to a general neuro. Genral neuro suspected MS he referred me to an MS specialist who said I’ve been investigated for all other likely things and it seems like possible MS but as my symptoms were quite mild by then and I was heaps better we decided a wait a watch approach to see if I did get any more episodes (as I mentioned above I wouldn’t have got DMD’s even though they felt I’d had two episodes of symptoms). I’m now waiting to see another MS specialist (I know) as my current one has gone on sabbatical.

How are things with you Mandy?

Reemz

X

Hi Reemz,

To be honest I feel likfe giving up (not at all like me)!!

Ive still been having the syptoms but they are deffinatly not as bed as my original big onset.

Im constantly struggling most days with intermitent balance and gait problems that can last for up to 2 hours a time. Im confused and feel lost in those times too. I feel that I only have about 60% feeling in both legs. I suspect the left is down to the arthritis in the spine and hip but I seem to carry my left leg differently.

My subtle tremors are really really difficult to handle…I feel like jelly and its as though I can only use them if I hold of grip something as tight as I can (which isnt very tight at all) anything gentle like sewing or cutting up my food on my plate is a nightmare…a very very messy one all down my front lol/

Balance problems, it feels like I cant keep my head still but my husband says that I am.

I have been getting migraines (I never even suffered from headaches so thats a bum)

Periodical night sweats (new thing)

And totally and utterly exhausted…talk about fatigue and lethargy :frowning: Im sleeping ‘ok’ at night once ive cooled my legs and feet down (takes up to about 3 hrs) and can sleep about 9 hours (broken sleep due to pain and sweats) but then I sleep about 3 hours in the day…most days.

The second brain scan showed no change to the first one done 12 months prior (they both showed 5 non specific foci apparently age related, (40)) and his extremly short repport said no evidence of demyelination. The LP showed inflamation of the spinal fluid but not in the correct areas for MS diagnosis (“non-specific”)

I don’t think there is any point in going for a second opinion until/unless I am as poorly as I was originally but these symptoms Ive been left with are a bloody nightmare arggggggghhhhhh but you know that!!

Ive seen a rheumy becuase of suspected Lupus but the bloods were negative even though I have the malar rash accross my sheeks :frowning:

The reason I mention fybro is that I stupidly pushed for a diagnosis about 5 yrs ago, the rheumy wasnt convinced but said that it was probable…and now everyone seems to want to label it as that. Fine if it is but I need help.

I described it to as a friend as “I feel like I was really really poorly at the start and now I am left with the scars of whatever that was” Incidentally long after fybro was even mentioned.

So thats where I am…you did ask lol. But to be honest I was looking to have a good rant somewhere soon lol. So so sorry to waffle on!!!

Anyways…how are you? When do you get your results? I can’t remember if you had the possible MS diagnosis last time we chatted :-/

I do hope your well and everyone else that has kindly repplied…well as well as you can be!!!

Love Mandy :slight_smile: