My wife is undergoing diagnosis for a variety of issues just now. Main ones being:
Serious fatigue
pins and needles in random areas of her left arm and leg
lack of feeling in random parts of her left arm and leg
memory loss
lack of attention
pains in her left arm and leg after little exercise
We have been through an MRI which showed nothing out of the ordinary. Lumbar puncture is coming up soon but in the meantime our doctors have been pretty poor in providing any kind of assistance.
Recently she had worsening symptoms of above where the fatigue became more serious along with the pains in the arm and leg. Doctor put it down to a migraine (!) and basically told her to take some Nurofen.
Frustration canât even come close to how I feel right now. What I would like some assistance on is seeing if there is any way of speeding up the process of diagnosis - either through the docs or direct with the neurologist. We have private care in place but this kicked in after she started going to the docs so I suspect we wonât be covered.
As an aside, she has just undergone a course of B12 injections (six over two weeks at two day intervals) which Iâm hoping will alleviate some of the fatigue.
Iâm sorry you and your wife are having a challenging time at the moment. Itâs so frustrating and worrying, not knowing whatâs going on.
With regards to the private healthcare question, in my experience, as long as you havenât been visiting the doctor before the private healthcare cover started, then you should be fine. The private healthcare usually requires you to have a referral from your GP anyway, so this shouldnât be an issue. Speak to your provider and ask what they need, as each have different requirements.
As for speeding things up, you will find that going down the private route will certainly do that, as far as cutting down on waiting times between appointments, tests and so on.
I hope that helps somewhat and gives you some idea of what to do next.
Thatâs a shame about the healthcare - but it might be worth asking anyway? The worst they can say is ânoâ, and then at least youâll know where you stand.
Iâm sorry I canât help you with the timing of the diagnosis cycle, because I didnât go down the NHS route, and because each local trust has different timings (based on demand to see neurologists) but most importantly, because every person is different, so some diagnoses may be more straightforward to make than others. MS is a condition where other conditions can have similar symptoms and test results, so itâs not always easy for the medics to be certain.
As for the LP, again, thatâs a difficult question as not everyone diagnosed with MS has a âtypicalâ result from the LP. Itâs possible for someone to have all the other tests and scans pointing towards MS, but have an LP result thatâs inconclusive. The LP can just help build up the case.
âHow long is the diagnosis cycle?â is one of those âhow long is a piece of string?â questions. Some people get a diagnosis very quickly, others have to wait years. A lot depends on your neuro, but a lot also depends on which tests you have and how conclusive the results are.
I saw my first neuro in September 2012, had an MRI of my brain in the November, finally saw the neuro again in May last year and got told I had Clinically Isolated Syndrome, come back next year. In contrast, My current neuro saw me for the first time in July last year, ordered an MRI of my brain and spine, a lumbar puncture and an evoked potential test, and gave me a diagnosis of PPMS in January this year. If Iâd stayed with the first neuro, Iâd probably still be waiting for a diagnosis.
As I understand it, a positive lumbar puncture is a strong indication of MS but a negative lumbar puncture canât rule it out as some people with MS donât have the oligoclonal bands they look for. I canât remember where I read that, unfortunately.
It is frustrating for both of you, but patience is necessary. Only your wifeâs neuro can diagnose MS, your GP canât. However, your GP can prescribe medication to help with symptoms like pain and fatigue, even without a diagnosis.
Well we had the lumbar puncture on Wednesday - bad enough for me to try and sit through but god only knows what it was like for my wife.
Iâll call in on the private health care this week and see what they can do to help out. Doc also mentioned something called Sarcoids - anyone any thoughts on this?
Will be back once we get the results which, with any luck, should be within the next fortnightâŚ
I hope your wife is doing OK now after the lumbar puncture. For me, that procedure wasnât too bad, but then I couldnât see what they were doing, except on the X-ray screen, which was black and white, grainy and hard to see what was what, other than my spine and the needle.
My neuro mentioned sarcoidosis as well, when he was going through the testing process - more specifically, neurosarcoidosis, which only accounts for a small percentage of all sarcoidosis. I think that, like MS, it is hard to diagnose, but it is one of those other conditions they like to rule out. I think it also involves inflammation (of cells), but more commonly arises elsewhere in the body. Much like the more common type of MS, treatment can involve steroids to reduce inflammation, but also like MS, I donât think that there is a cure.
Try not to worry too much - it sound as if the neuro is being very thorough.
Please update us - I have similar symptoms and have just had a normal MRI but my Neuro doesnât see the point of ordering any other tests without something showing up first on the MRI so at least your wife is lucky that she was offered further tests.
I was in hospital and awaiting a referral to outpatients which has taken over 5 months on nhs. I still went private ok I just asked my gp for a referral rang up my provider and got a reference number which I passed in to the gp secretary and she wrote me a letter which I took in. I was covered for any MRI scans needed and I saw an MS specialist as we had an inkling the hospital suspected it when they ordered a LP (which was clear!) I have now been referred back to nhs as I have had to be prescribed steroids and my private insurance doesnât cover prescriptions and I couldnât afford to pay for them myself.
I hope you get some answers, I presented very much with the same symptoms and had optic neuritis earlier without realising (I donât do Drs and hospitals so this has been a bit of a smack in the face for me lol)
