as you know ive had a build up of symptoms that look like Ms, had a scan in January clear and just had one a week ago and got results today. They state compared to last scan no abnormality found on brain, cervical cord signal is normal, little disc degeneration but no significant protrusion!
what do I do now? This is freaking me out, I should be so happy and I wan except IVE got these symptoms that won’t go away, plus they’re worsening in areas add to it lhwrmittes with no explanation! What should I do next
yes the back pain area is below where the scan was, more in the middle of my back than anything
o have a second opinion booked for next week so I’ll see how that goes, i want an answer so I can do something about it, the only other thing it could be reasonably is b12 I guess or soinal issues in another area?
thabks again for the reply, I know there’s ALOT of mimics and I don’t know what it could be but I need to find out what it is, possibly b12 but my levels were 350, albeit I was taking a supllement at the time of 5,000iu a dau
only other thing Is Lyme disease I guess which I know there’s been no testing for yet
Diagnoses for MS are a lot better these days even though it can take a while…you can only go back to your GP until they find an answer. I had my first symptoms at the age of 14…l’hermittes and optic neuritis but I was just over 40 by the time I had my dx so I understand how frustrating it is. However many of the problems it could be can be made worse by stress so try and relax and maybe book a double appointment with your GP so that you have plenty of time to chat.
Please do try to look at the positive, trust me despite all the stuff going on, if I could have had a trapped nerve instead I would have taken that option quite happily, MS has messed up a lot of stuff.
I really hope that it brings you one step closer to an answer and ultimately, feeling well again
i hope your all right and I shild be looking somewhere else
its only the lhermittes that’s pushing me more towards Ms than anything, but like I’ve said there’s been so many symptoms come on with no relapsing pattern it’s all really odd
When i was first diagnosed someone said to me it might be Hughes Syndrome, needless to say it wasn’t however this is an issue with your blood mirrors MS symptoms but is curable.
Hi Kris, annon above is trying to calm you down and it is obvious you are very stressed. I have also seen that you have posted on other Ms sites too. I really have to commend you for phoning Medway to get answers on the biotin. I do really know were you are coming from because I am the same as I have been in limbo for so long.
I had radiation treatment for hodgkins Lymphoma in 1990 when I was 25. I recovered well but 6 months after treatment I got l’hermittes badly. I was so convinced that I had MS - there was no internet at the time but I went to the barbecan library at lunch times and poured over medical literature. I saw a neurogist had tests -full body MRI, LP and VEP tests etc. All were clear. I was told that very slight inflammation can cause l’hermittes which often cant be seen on MRI. I was told that this inflammation was due to the radiation treatment. The l’hermittes went away but in 2005 I had numbness. Back to neuro I went and another clear MRI. Numbness went away, then in 2008 I had another attack of l’hermittes, numbness fatigue etc. Didnt go to neuro this time as GP said it was a virus and I couldnt have MS because my scan in 2005 was clear. I recovered to 90% l’hermittes went but a year later I started to notice foot drop appear after a long walk. I hounded my GP for over a year about this until I finally saw a neuro in 2011. New scan revealed a lesion on the cervical spinal cord. He said it was neurodegeneration from the radiation treatment as the LP was clear along with brain scan.
I went for another opinion in 2012 and he completely discounted the radiation theory. He said he thought I had suffered from benign MS since 1990 and that it looked like SPMS now. But after another MRI and clear LP he said that maybe I had had a one off attack and suffering from that. Scans dont look like it is progressive.
I saw a third neuro who said that the attack in 1990 was probably due to the radiation but what is happening now looks like PPMS but cant diagnose me as I dont tick enough of the boxes.
So there you go , 3 neuros with 3 different opinions.
My friend had a an attack of l’hermittes and clear MRI a few years ago. She was frantic too and got no answers. Was told it was depression and anxiety causing her problems. She went and saw a Dr Amir (dramir.com) and he said she had a problem with her jaw (TNJ?). She wears a brace and has had no further problems. HE has been mentioned here (and slagged off too) as being a cure for MS issues. My friend swears by him although she didnt have a dx of MS but she was heading that way. I have been tempted to try it myself but I have spent so much money on other things like getting all the mercury from my teeth and hyperbaric oxygen therapy. I am just about to spend £1000 on an FES device for footdrop.
i knlw ok obsessive with it all but I need answers, I have a family that I am the main provider for and more importantly than that a family that I love and want to spend time with. I cannot have something stop me from enjoying that, I’ve never needed help off anyone so to need it now is really hard.
i know clear mri is good but at the same time it’s doible edged as we know something neulogical is going on but without lesions we cannot diagnose and also I know PPMS tends to be soinal lesions and issues. All my issues so far suggest spinal issues.
im worried about how fast it has all come on and how so many problems keep getting added in the space of four months, whewr will I be in four months time! That’s why I’m being so proactive about diagnosis treatment etc. I cannot wait and let this define me
sorry for keeping on, I really appreciate all the answers and insights off you all
from my experience on this forum people with clear mris and obvious neuro synptoms tend to be given a diagnosis of FND - Functional Neurological Disorder. There is a website for this and quite a lot of mention on the New Diagnosis Section of this forum which you could look back on.
I have come to the conclusion that neurology is a bit of a guessing game !
Kris I’m also pleased that your scan came back clear but fully understand and sympathise with you feeling upset at not knowing what is wrong. I’m glad you’re having an LP, hopefully that’ll reassure you a bit more too. Fingers crossed that you get answers and a diagnosis that will respond to treatment.
Have you had steroids? My daughter has just been dx with possible Transverse Myelitis and her neurological symptoms were very worrying. She had a short course of high dosage steroids which alleviated things for a while but hasn’t cured it yet, but it’s a huge relief it’s not ms.
Please let yourself accept that this isn’t the only illness you could have. You mention disc changes in your MRI, these can also affect your neurological system badly and can be operated on. I’ve had a new disc in my neck and still can’t get over what a difference it’s made. At least you seem to have a dedicated medical team who aren’t just sending you away and giving up with no answers, you’re very lucky.
Enjoy your time away and believe that you will get answers, your doctors obviously know what they’re doing. Some of us went years before a dx, hopefully your journey won’t be nearly as long or depressing.
Hi Kris. My daughter has what sounds like sciatica, and had strange sensational changes in her legs, and L’Hermites but also lost all sensation in her bladder and had no control. Initially she was just given painkillers for sciatica but then she was admitted to hospital under the urologist when the bladder problems occurred. They did an MRI which was okay and referred her to the Neuro who was really concerned she might have ms as I do, but my dad has motor neurons disease too, so our family history made it very worrying.
They did an LP which was clear so he put it down to Transverse Myelitis and have her a heavy course of steroids which got her bladder function back but she’s still getting neurological symptoms. She sees the Neuro again at the end of May so maybe we’ll know more then, but it’s very worrying.
It took a good 2 years of me having debilitating symptoms before I got my dx so I can sympathise with you on the stress of living in limbo. You can only try to remain positive and be realistic about what you can and can’t do without putting too much stress on your body. You’re only making life harder for yourself if you overdo things but get depressed and frustrated if you don’t do what you can. Until you find that balance you won’t be happy. That’s the case whether you have or haven’t got MS.