So Blooming Frustrated!

New diagnosis and before diagnosis
1

Hi Guys

I am sure you’ve heard of similar frustrations before (some of you maybe yourselves?), but I really feel at my wits end right now. Quick background on me. Suffered from numbness down RH side which was first noticed in my arm. I have been ‘run down’ for approx. 4 years suffering frequently with viruses, bugs, ulcers, nasty infections etc. Then back in Feb I suffered really bad from dizziness which was DX as labyrinthitis, which then returned in May and finally very worse in August. This time in August I suffered from complete numbness down my whole Right of my body from face to my toes. I’ve been tripping up, walking into things , suffering from burns etc as I don’t feel temps.

Issues for past 4 years

  • Reoccuring Tonsillitis and throat infections
  • Always picking up colds/viruses
  • Feeling run down and tired all the time
  • Frequent mouth ulcers
  • Large Ulcer on body (August 2014) This could not be explained
  • Occasional numbness in RH arm (noticed 8-9 months ago) Mentioned this to GP at the time who said it was nothing to worry about.(This numbness has not gone away)
  • Feb 2014- Diagnosed with Labyrinthitis after having a virus
  • May 2014 again as above
  • August 2014 as above but this time suffered from numbness on RHS that wouldn’t go

Right now:

  • Numbness continues on right HS. This has not improved at all.
  • Fatigued and having to rest on the bed in afternoon
  • Poor eyesight in right eye and blood shot eye a lot of the time
  • Occasional Dizziness and feeling of being drunk
  • ‘Jelly Legs’ Feeling unsteady on feet without support most of the time
  • Tingling (electric current/shock) sensation at night time when I get into bed
  • Suffer from insomnia due to the above
  • Fatigue constant

Doc ruled out stroke and referred me to neurology. Finally saw neurology clinic doctor (not consultant) who did a full exam and sent me for an MRI 2 weeks later. I asked at the time if I was able to have my spine and head done? She refused as she said that it would not be MS if no lesions in head. They also didn’t use contrast in the MRI and treatment was shoddy (Radiographer was talking to a random porter about a chick he chatted up and looking at facebook pics on as I came in) Then after it was done they sent me out of the mobile scanner in the car park to find my own way back to the waiting area all dizzy and confused.

Anyway I’ve been signed off work these past 8 weeks as doctor said it was best until results were known. Had to chase up hospital repeatedly. Finally got some news from the Secretary Friday who said ‘we’ve sent a letter out and have discharged you back to GP’ Without any explanation or anything. I recall Doctor at the hospital saying 'we’ll recommend GP starts you on ant-epilepsy meds if nothing found-but warned these would make day to day living hard!) Hard when i have 2 little boys to look after and my job.

I can’t really give work any updates as I am in the dark myself, but something definitely isn’t right.

I am going to ask for a second opinion but wondered if anyone else had been in a similar situation?

Many thanks

2

Hi,

I don’t dispute that something’s wrong, but it doesn’t sound like MS to me.

MS doesn’t cause increased general infections. It can cause increased water-infections, but that is a complication of urinary retention, which is a common symptom - nothing to do with increased susceptibility to infections, per se.

MS doesn’t cause ulcers either (again, with certain exceptions - if someone is severely disabled due to MS, they may develop pressure sores, but if you are standing, walking and have until recently been working, this hardly sounds plausible in your case - and in any case, pressure sores of course don’t form in the mouth. There are some conditions that are associated with frequent mouth ulcers, but MS isn’t one of them).

It is not impossible, but very, very rare to have spinal MS lesions in the absence of brain lesions - spinal lesions are both less frequent, and harder to spot on MRI. That’s why the first and most important place to scan, if MS is suspected, is the brain. I happened to have a spinal MRI first, but that was only because I was suspected of having a slipped disc - it’s not standard practice.

The same with contrast. The only purpose of contrast is to distinguish between active (current) and historic lesions. If no lesions are seen without contrast, they wouldn’t be seen with it either. It’s only useful in someone who does have lesions, to find out how active their MS is at the moment - i.e. how many current versus old. If a lot of lesions are current, it would indicate the disease is in an active phase. If they are all old, it would indicate the disease has been active in the past, but is in a quiet phase (remission) at the moment. These subtleties are academic if no lesions are seen in the first place - contrast cannot reveal invisible lesions, plus it is not especially pleasant (intravenous anything is not especially pleasant) and does carry some slight but real risks, which are not worth exposing you do unless there are good grounds for thinking it will provide some additional diagnostic information - which, in your case, it wouldn’t.

I am not a doctor, and I DO believe there is something wrong, but putting together the story so far, my gut feeling is not one of MS, and I don’t think investigations so far have been mishandled (i.e. not having a spinal MRI or not having contrast, as I don’t believe they would have shown anything extra).

Unfortunately, there are over 100 things that can mimic MS, and it can be a long, hard slog to find which of them it is. There can be quite a lot of overlap between Neurology and Rheumatology, so if Neurology are saying it’s not their baby, the next logical step might be a referral to Rheumatology. (I went the other way round - a few abortive trips to Rheumatology over the years - reassured nothing was wrong - before finally ending up at Neurology, who I think had a pretty good idea what it was, right from the start).

Particularly in the early stages of a disease, when symptoms are still quite vague and generalised, there can be little to determine whether Neurology OR Rheumatology is the right referral, so either is a reasonable first try. Unfortunately, that means there is a 50-50 chance you don’t start off in the right department. That doesn’t mean sending you there was wrong - it just means the first hunch isn’t always the right one.

GPs generally like to feel they’re acting on their own initiative, rather than caving in to patient demands, so I would suggest the next step is to emphasise you’re still clearly not improving, despite Neurology apparently being unable to find anything, and ask what other avenues there are. That should let the GP feel it’s their idea where to try next, but don’t settle for being sent home to see if it gets better by itself.

I feel a second neurology opinion is likely to draw a second blank, given that you had no abnormalities on MRI. Neurology, like all of medicine, is evidence-driven, and they can’t diagnose what they have been unable to find. So unless you were to have another scan (usually at least six months after the first) which showed up something new and interesting, it’s unlikely you would get a lot further with a different neurologist, as they would be hampered by the same lack of evidence as the first.

So I think it’s very reasonable to start asking: “What if it wasn’t Neurology? Is there anything else we haven’t looked at?”

I’m sorry, getting the right answer does take a long time, and sometimes a few false starts. But all I can say is it’s important to get the right diagnosis, rather than an incorrect one, based on insufficient evidence. You may have one of the other 100 things that look a bit like MS, and it may even be easily fixable - but that doesn’t always mean easy to diagnose, unfortunately.

Tina

3

Have you ever been looked at for any rheumatological disorders? The red eye is suggestive of dry eyes, which is associated with Sjogren’s syndrome. Which has many potential symptoms, including fatgue, mouth soreness (and I think ulcers). I know this because I have been diagnosed with probable sjogren’s, and it is one of the causes being considered for my neurological symptoms. It certainly can cause the neuro symptoms you describe but is quite rare. If there is a possibility that your illness is being caused by a rheumatological disorder,t he hospital can order the bloods.

I have to say though, if you are getting L’Hermitte’s then you should be having a cervical spine MRI done. I had weakness Jelly legs etc. 5 years ago, for a period of time, and was sent to the neuro who did a brain only no contrast MRI which came back clear, and who then basically dismissed me as stressed.

After suspected ON and the addition of L’Hermitte’s and focal neurological signs end of last year/beginning of this one, I was sent back to a neurologist, (a better one in my opinion) who ordered a full spine and brain with contrast, and guess what, several lesions were found in C5/C6 - exactly the right place to have caused those symptoms. So I may not have MS (still on the diagnostic journey) and probably I have had more lesions since, but I strongly suspect that one or more of those lesions were present in my spine back then (if only they had cared to look).

The thing is, I fought back then, and fought, and fought, to the point of making myself actually stressed and possibly depressed, and it didn’t help. Time has given the diagnostic situation more clarity.

So do ask for the second opinion, do ask for the MRI of your cervical spine (or buy yourself one if you can), and do keep pushing the GP to take action on this, but also please balance it with your wellbeing, and recognise that at the moment you may not be able to get any answers. (this is coming from somebody who absolutely failed at doing that so I do know how difficult it is)

Anyway, I am not sure if that has helped at all, but feel free to message me if you just want someone to chat it through with…

Good luck,

Leah :slight_smile:

4

Thank you both for your responses. Finally got my letter today saying Brain MRI is clear and have discharged me as cannot give a reason for symptoms.

Back to GP me thinks

thanks