Forum

Anyone been Misdiagnosed and not MS ?

Well after three years of diagnosis, my GP now thinks I have Churg Strauss Syndrome (which is a form of vasculitis).

I have queried my MS diagnosis with the consultant Neurologist on several occasions.

The reasons he is thinking this is extremely high eosonilpil count, positive PANCA and symptons consistent with vasculitis:

skin rashes, allergies and asthma, some neuropathic pain effects.

Does anyone have experience of this ?

Really confused and not knowing what to do? I know have to wait months to see a Rheumatologist.

Helen

x

I haven’t Helen, but it definitely does happen.

Seems terrible to have to wait so long to see a rheumy :frowning:

I hope a cancellation turns up!

Karen x

That sounds a nightmare and as you are on copaxone you must have a very good gp who doesn’t just write everything off to the ms and say talk to your nurse.

I dont know the condition you mention but will get googling.

I really hope yoy get some concrete answers soon.

Pip

hi helen,

is vasculitis worse than MS plz? or other way round?

thnx

Anna x

Hi helen, yes, i`ve been misdiagnosed.

Dunno if youve read any of my posts, as my journey to diagnosis was fraught with different neuros offering a variety of whats what.

Not heard of the condition you mention, but5 will google it to find out more about it.

From 199 to 2003, i was told i probably had PPMS.

from 2003 to 2010, I was given a 95% diagnosis of PPMS.

2011 that was changed to HSP.hereditary spastic paraparesis

A year later, that was dismissed and PPMS was suspected again!

2012, guess what happened? PPMS was squashed infavour of;

Idiopathic spastic paraparesis…fun innit? Huh!

In a nutshell that means, spinal cord damage.........cause unknown.

What a lovely time i`ve had!

What are your symptoms, helen?

luv Pollx

Hi helen. Just googled the condition and felt awful for you. But it does vary widely from person to person.

I think it is shocking that this was not picked up and acted on before…ie if you do have it.

We are sometimes in the hands and at the mercy of bungling neuros, eh?

luv Pollx

Hi Thanks everyone for their replies.

Since seeing my GP lots has happened.

I went for the chest xray which he ordered urgently - due to see him again on Monday for the results (but I already have them)

My MS nurse phoned and went through all of my blood tests, particularily the ESR, CRP and eosniphils.

On no occasion have my CRP or ESR but out of the normal range.

My eosniphils ahave been raised on a few occasions, particularily when I have these skin rashes.

I have looked at it and I really beleive it to be a stomach issue, again I have been complainly that something is wrong, mainly constipation but then I get bouts when I have diaorea (sorrry cannot spell) and horrible stomach/intestine cramps etc.

I looked at this postive PANCA blood test and this too can be positive in Ulcerative Collitis and note that I few on here have this.

I have also seen the dermatologist who has taken a biospy from the skin but he did not think that is was a vasculitic rash.

He felt that is was toxic something or other which could have been caused by anything … virus, drug, allergy ??

People tell me that in vasculitis the CRP and ESR are usually raised quite considerably.

FINALLY,

AT 8.15PM friday, Professor Ward (Rheumatologist) called me to say, I hear you have a diagnosis of Churg Strauss Syndrome. We had a brief chat and he said no, does not sound like it and then asked was I walking about? Yes I said.

He offered to see me and then refer me to Rheumatology if something was going on.

As I said, it all coincides with gut problems wo if anyone could offer and advice on this, would be greatly appreciated as so fed up of it all!

Helen

x

Oh I forgot to add MS nurse had to deal with it because the Neurologist is off sick and has been for a while, not sure why?

What is wrong with the system???

Helen,

I didn’t realise, at the time of posting, you had not yet had your chest X-ray.

At this point, it still sounds similar to what happened to me. I had raised ANCA (can’t remember if it was P or C, but they’re all associated with different types of vasculitis).

But inflammatory markers (CRP and ESR) were NOT raised - neither were any of the other tests abnormal. Raised ANCA in complete isolation is very unusual, and not diagnotistically very helpful. Although, to confuse things further, I’d had significantly raised ESR, reasons still unknown, when I’d visited the doctor a year or two before, for what I now think to have been a relapse.

I’ve had asthma and allergies all my life, but they are so common in the general population that I’ve never been convinced that has major significance, either.

Anyway, on discovery of the raised ANCA, I had both lung X-rays and kidney function tests. I was petrified of the lung X-ray, as my father (who had never smoked) had recently died of a rare form of lung cancer. As it was still very fresh in my mind, and I was feeling increasingly unwell, I’d half got it into my head I’d got the same thing, and was going to see a sinister mass there.

Anyway, lung and kidneys were both fine - which again was not typical of vasculitis, which would commonly affect one or both.

So they did the ANCA test again - NORMAL result. Whole thing immediately dropped, and never mentioned again. In fact, I’m not sure I was ever told, officially, I didn’t have vasculitis. But the focus immediately shifted back to MS, and I was fairly promptly diagnosed with that.

I’m still mystified by the abnormal ANCA and ESR readings (each just a single time). But from what I can gather, although ESR is variable, ANCA wouldn’t usually spontaneously correct itself.

I’m still curious whether they have bothered to retest you, as I only found out afterwards that it’s known for having quite a high rate of false positives.

Strictly speaking, an MS diagnosis is never 100% certain, unless arrived at post mortem, so I still occasionally wonder: “What if they were wrong, and these one-off anomalies DID mean something, and weren’t just laboratory quirks?”

But I think it all comes down to trust, in the end. My neuro is an MS specialist, and I have to trust he doesn’t just recklessly go around diagnosing people. Although he admitted diagnosis is never certain, he must have been certain enough for all practical purposes. It was enough to satisfy the insurers, and I feel they would quickly have seized on any doubts.

I don’t know what I’m trying to say, really. I suppose that your results, like mine, are “unexplained”, yet not typical of the raft of results you’d expect of someone who had any of the several forms of ANCA vasculitis.

I do think “Are you walking around?” is a pertinent question, because I remember thinking, when the same issue arose with me, that it seemed odd I wasn’t more ill. Of course, I was quite ill enough - it was MS, after all - but I’d had symptoms for years and years. All the evidence I could find suggested it was very unlikely I’d still be working, and walking around fine (well, nearly fine), if I’d had literally years of untreated CNS vasculitis. So that helped reassure me it couldn’t be it.

Oh, I forgot to tell you I’ve also had a skin rash, on my thigh - pinhead fine, but not raised. I was referred to Dermatology, but as there was a 12-week wait, there was nothing left for him to see, or biopsy, by the time I got there, so he issued me an open-ended re-appointment (so I wouldn’t have to go back through my doctor) and told me to ring if it happened again. Which it never has yet. So another thing on the list of unexplained happenings that don’t quite fit anywhere.

I still think you might end up back on the MS path, but perhaps with a few things that are never explained. One of the things that has stayed with me is my neuro telling me: “Common things are more common”. Whilst MS is still not exactly common, it’s far more so than ANCA vasculitis. So if it’s a choice between the two, probability lies on the side of MS.

Tina

x

have they ever done a lumbar puncture to tell you a answer for ms? i had a mri scan done and it showed white spots and alot of them but they said they could’nt be sure if it was ms n said they wanted me to have a lumbar puncture to be certain, so i had that and it came out positive for ms, they said its the only way they can say either its positive for ms or negative, id ask for the lumber puncture to be done

lumber punctures dont test for MS.all they do is rule out other diseases,their isnt a test for MS,what most of the tests do is rule out other conditions.

i never knew that, they told me that the only way to say if its 100% ms or not is to do a lumbar puncture if they cant tell from the mri scan and previous medical history

hi vicki

i agree with jaki. i refused a lumbar puncture-telling them why. they accepted it wasnt necessary.

take care.

ellie x

Is there anyone out there that has had a diagnosis of MS and then been told it’s not?

I was diagnosed some 15 years ago with MS with Sjogren’s Syndrome. I had all the support that I needed and wanted for nothing (other than to be well of course!). Then I moved house and had a new GP and consultants who tell me - after extensive new testing -that I don’t have either of these conditions.

Brilliant you may say but I still have the same deteriorating symptoms. My GP is also at a loss on how to treat me - I’m on the same meds as for MS but will not give me steroids now - cos I don’t have ANY diagnosis now. I’ve also lost the support of the MS clinics etc.