When do you say, enough is enough?

I have been ill for over 18 months now and have had every blood test known to man, nerve conduction tests and a brain and c spine MRI everything is clear, apart from bloods showing something autoimmune is going on. My Vit D3 level is very low. I have seen the eye clinic for blurred and double vision, plus unable to focus and am getting little answers. Been to the bladder clinic and after 3 differant medications and 3 uti’s in one month still not got it sorted. Last visit to Nuero in 20 mins he said its not MS, we are not looking at MS yet to we will MRI the rest of your spine to look for MS! When asked if its not MS then what is causing all my problems, he could not give me an answer. My whole life has changed to accommodate my ‘illness’ and I and my family have learned to live with it, making changes as needed. My question is, if my next MRI is clear, do I push for a LP or do I just try and forget about getting a Dx and try and get on with my life? I am getting stressed now knowing that my MRI is coming up and then so will be the next 8 weeks or so when I have to wait for the results. My GP thinks its early MS and time will tell, the Nuero says if anything major happens come to A & E and tell them you are under my care. Part of me thinks if I do get an early Dx, then maybe I can have DMD’s and it will make things better, but do I want to put such powerful drugs into my body? I’m fed up of feeling helpless and feeling like a hypocondriac Thoughts?

Hi Anon, Diagnosing neurological symptoms often takes a while because as you already know, there’s a wide range of potential causes which usually need to be ruled out. On that basis alone it’s unlikely your neuro will commit to a diagnosis if he doesn’t have enough evidence with which to do so. Lot of us here take Vitamin D3 on a regular basis; are you being treated for your very low levels of vitamin D? You’ve not menioned any other symptoms you may have, but best to make sure your neuro is aware of them if you have any. The more information he has to work with, the better. Karen (Rizzo) is the most knowledgable person here to answer your questions on MRIs, I’m sure she’ll pick up your post and reply. But as for LPs, I had one done and it was fine, nowhere near the horror stories we sometimes hear about, but that said, my situation was very different to the one you find yourself in. If it were me think I’d be reluctant to have one if there’s no evidence of anything on the scans, but that’s just me. LPs are invasive procedures and not an absolutely necessary tool to diagnose ms. Whether you should forget about gaining a diagnosis for now, is a decision only you can make I’m afraid. You’ve come this far so maybe you should try a bit longer? Whatever you decide though and without a diagnosis of any kind, it’s best to try and keep an open mind. Sometimes the wait and see approach is the best one, as my neuro said at my very first appt; better to get the right diagnosis from the start rather than him galloping off down the wrong path, particularly when it comes to potentially dangerous treatments. I hope you get some clarity of some kind soon. Good luck and let us know how you get on. Debbie xx

I have fatigue, I had a numb left arm for 2 months total arm and top of arm for 15 months. Pins and needles and numbness in fingers and hands. Loss of feeling in left side. No feeling in genital area. Nerve pain in right foot- very painfull. Memory problems, co ordination problems walk into things and mis mouth when eating etc. RLS. Heavy stiff legs. Poor grip and numb foot mean I have had to buy an automatic car. Double and blurred plus fuzzy vision, ptosis. Bladder problems urgency and frequency, been to bladder clinic pelvic floor etc all fine After first vist to Nuerologist he thought MS but MRI was clear.

Hi and welcome. You mentioned showed that something autoimmune was going on, so have you seen a rheumatologist. Autoimune rheumatology diseases such as lupus and sjorgrens disease show up autoimmune markers in the blood. Whereas although MS is an autoimmune disease it does not show up markers in the blood. Instead markers are only seen in the CSF which is checked in a lumbar puncture. You may be advised to have a LP and honestly they are fine to have so dont worry about that. I have had symptoms since 2008 and still do not have a dx, it is common to wait a long time to have a dx! Yesterday I had my 3rd MRI in 3 years!

Take Care

Moyna x

Hi, I went through every test used to determine MS, as I presented very typically as PPMS.

All the tests came back normal.

Move on around 14 years and I now have been told it is defintiely NOT MS. My label is spastic paparaesis/cause unknown.

Limboland is a horrible place to be. I am half in and half out, if you get what I mean by that!

I dont think I would push for an LP, if I were you, unless a neuro orders it.

I know how you feel and can only advise you hang in there, try to rest well and look after yourself.

If you are unfit to work, then so be it. Your GP should give you sick notes. On mine she wrote debility. I was falling a lot, having spasms and was soooo knackered!

Good luck.

luv Pollx

you will know if its time to stop and wait to see what will happen. I too have had clear scans and bloods, but I know there is something wrong. Because I beleive in myself I decided to make big financial changes to make life easier. It took me a while to convince my hubby but now he says he has never been as happy than he is now. I started with symptoms back in 2006 and have marked episodes since then and each time been left with a small disabiltiy, ie week left leg, loss of hearing in right ear, week left arm and blurred vision. I had two episodes last year one in Jan and one in Sept. So in June I started to make changes and this will not be right for everybody but it has worked for us. House on the market, sold one of our cars, sold our caravan. De-cluttered and sold everything from furniture to ornaments, in other words things that we did not really need. We sold the house in October and downsized to a smaller one in Feb this year. My half pay ran out in the same month, so we just made it as I was the main wage earner. My company terminates my contract in August due to ill health and the ESA has stopped my payments this week. I am so glad I beleived in myself and made the changes. I do not know how long it will be before I get a diagnonsis or if i will do. What ever you decide I hope you get contentment x

Thanks for all your replies. I have seen a Rheumatologist and I have Raynards and conective tissue disease, I also have something in my blood which could indicate Lupus but Lupus blood test was negative. But these illnesses do not explain all my symptoms. Decided I will have the MRI next week and keep my appointment with my Nuerologist in November. I will chase my Gp in 8 weeks for my MRI results but if its clear, which I expect it will be, that’s it. No more tests. I will try to eat well, lose weight if I can, carry on with my Vit D3. Try and cope day to day and see my Gp to manage my symptoms. And when people ask me what’s wrong with me, I’ll tell them the Dr’s don’t know. I will listen to my body and rest when I need to. Thanks again

Only you can decide when enough’s enough. If it were me, and the MRI was clear, I would not only push for an LP, I would push the neuro to start considering rarer conditions, e.g. genetic conditions, and referring me as appropriate. If MS is the most likely condition (because alternatives have been ruled out), but the MRI and LP aren’t stacking up, I would get a referral to an MS specialist who isn’t afraid to diagnose MS in these circumstances. (My own neuro is one incidentally.)

However, if treatable conditions had been ruled out, my family supported me regardless, I wasn’t having relapses and I was getting the support necessary to effectively manage symptoms, then I think I could live without a diagnosis.

Karen x

Hi Anon,

I can sympathize with a lot of what you are going through (though I have no been ill for 18 months). I’m not diganosed with MS, but I had optic neuritis a few months ago, a long with several other symptoms like migraines, dizziness, tingly hands, fatigue, etc. etc. I had three MRI done, first one on the brain showed two small lesions but the doctors said it was not sufficient to diagnose MS. My optic neuritis started to get better, and then one morning it just came back full on at which point I went to the ER. The second MRI was one was one of my neck, came out clean, the third was of my brain again a few months later, and there was one spot. I also had an LP done, and it came back not clean, but clean enough to not be MS. i.e I had elevated IgG levels, elevated mylin degradation product all of which were not high enough for the doctor to think it’s MS, and 2 oliogobands (apparently you need 4 to be diagnosed with MS). I felt like crap for about 2 months and I too felt like a hypocondriac. It’s like you never know if your crazy or sick, and it’s really frustrating. Iv’e felt good for 2 months now with some weird things going on here and there, but my advice is to just relax and don’t worry. Obviously take care of yourself, I have also been taking vitamin D and other supplements, but Iv’e stopped worrying about wheter or not I have MS and just live my life. When it comes it will come, and that’s all we can do. No point in worrying day after day about it. I know it may be a bit more annoying for you since you have been feeling ill for so long, so I admit I don’t know exactly what you are going through. If having LP will ease your mind a bit, then go ahead and push for it, but just try not to be too disappointed when it comes back normal or “slightly” abnormal but you still get no diagnosis. The criteria for diagnosing MS is a bit odd, and it seems like you have to catch it at the perfect time to actually be able to diagnose it.

Hope you feel better and find some peace. Best of luck!