Hi all, First time in this forum I’m looking for some help, advice or nice words anything Since January I have been progressively suffering from symptoms that are similar to MS, but my doctors will still not associate my symptoms with MS? I suffered an optic neuropathy in January which left me with a flashing light in my eye, since then they have found white lesions non specific on my MRI. My other symptoms include tingling hands, cramp in my hamstrings and bladder problems at night. Whilst my eye continues to flash. I’ve had lots of blood tests, a lumbar puncture and all clear. Now waiting on results of a VEP and ERG. Currently under moorfields hospital. Just stuck no diagnosis and stressed . Help?..!
I know how you feel, Snowbiker. I’ve been having various symptoms for 3 and a half years now, but still no exact diagnosis. I’m currently taking B12 for 3 months after which if I still have problems they will finally give me an MRI.
It does sound though that they are thoroughly testing your eye problems, which is probably the most important and pressing issue. Once they have the results of those tests it may give them more insight into the causes of your problems. There’s nothing more you can do at present but wait it out I’m afraid. You just have to see each one of these tests as bringing you one step closer to diagnosis, even if the diagnosis takes a long time coming.
In my case, I can logically accept that the neuro needs to rule out deficiency issues as an underlying cause, before they can then move onto the next phase of testing.
But while no one wants to have bad news, limboland does tend to leave us feeling isolated. You’re doing the right thing in posting here, because even if it doesn’t turn out to be MS in the end, you need to talk to people who can understand how difficult this phase is for you.
Hope you get some answers soon so you can start dealing with it rather than putting up with it…I’m also in limbo have been for nearly 4 years, changed doctors and now being refured for mri and have an neurology appointment in September, remember always ask for a second apinion if ur not happy with the one you got. Fingers crossed they get to the bottom of it and fix you up. Xx
It’s been a year and a half for me with progressive symptoms and a diagnosis of CIS with a high risk of developing MS in the next few years. I have read a lot of the threads in the forums here and am thinking I am so lucky to have the healthcare professionals I have. My list of specilists;
- Occupational Therapist
- Urologist (referred)
- Gastroenterologist (referred)
- Dietician (referred)
I see my neurologist every 3-6 months and she is brilliant. She is convinced I have MS and is watching me carefully. My GP is so good I do not want to move, but I have to because the flat I am in is too dangerous.
As has been said, get a second opinion if you want one and just remember that you are not alone. This seems to be the typical story of those with a diagnosis… I know when having my bad days it is hard to remember that though.
Thank you all for your messages, it’s kind of good to know that I’m not alone and I take some comfort in that. Of course I’d much rather we all had a clear diagnosis but I’m quickly learning that’s not how ms works Update is that following an appointment with my neuro today in which I got very insistent, I’m now being referred to the neurology hospital in London as an inpatient to go through all kinds of tests and hopefully come out with some better understanding of what this is. Apparently I’m a very ‘puzzling’ case! Much rather just be normal Not looking forward to the tests (hate mris) but means to an end Wish you all the best for the future.
This is my first post, I am looking for answers for how I feel. I have pain and twitching in my legs and arms. I have been getting it in my back and once in awhile in my face. I feel tired and my muscles feel weak. Are these signs of ms, this has been going on for about two months and seems to be getting worse. I am going thru hell right now. I went to my doctor, they ran blood tests and all were normal. I keep going back and finally my doctor told there is nothing wrong with me, and that it’s in my head. Does anyone have any advice for me.
Another newby concerned with symptoms and looking for advice sorry! I’ve had on and off symptoms for about 4 years, when I started with pain and numbness in my arms, docs tested for carpal tunnel, which was negative but was then left to deal with it. I’ve had recurring tingling, numbness, weakness and clumsiness over the years, but always put down to a virus, which I accepted.
Two years ago I had optic neuritus, but attended an out of hours place so just got given fab painkillers. Now the exhaustion is horrific to the point that I’m finding it hard to look after my children (past 3 weeks), I’m finding moving hard as when “I tell my body to do things” there seems to be a delay in it happening, and the numbness, tingling and pain in my left side is bad. I’ve also had severe vertigo for the past 3 weeks.
I already have two auto-immune diseases (vitiligo and hypothyroiditis), but I feel like a lazy idiot, and I’m really cross with myself. How do I explain all this to my doctor, and say that I need an answer? Without feeling like a total waste of space.
Any advice would be appreciated, thanks.x
WFoX - I find that keeping a symptom diary helps, so when I see my GP (or other medical professional) I can write up a clear, simplified and to the point version (keep a copy). You might find this site useful too www.neurosymptoms.org Just tell it like it is.You put it very clearly above. I’m still in limboland, though I received a preliminary diagnosis of FND in January I’ve had other developments and have been referred to neurology again. Keep on asking for help. Ask them to be clear with you and be gently persistent. Parenthood is hard enough without your own body throwing a tantrum at you! All the best