Hello everyone, This is a long winded one so please bare with me… Last year my symptoms started with trigeminal neuralgia which persisted for about a week. Worried about maybe needing some medication I went to a drop in centre who said it was migraine, however, at that point in time my face had gone numb on the same side, and stayed numb. The degrees of numbness change, but it is never 100 percent back to normal. Over the course of the following week the numbness spread to the too of my head and down my neck and right shoulder blade. At this point I got in touch with my neuro surgeon who had carried out two surgeries the previous year on my lower back. To cut a long story short, I developed over the next few months pins and needles, and numb areas which stayed numb,again never recovering fully, difficulties walking when the summer came along, dizziness and balance issues which lasted all summer. I had extreme fatigue that was very disabling. I saw a neuro in the march after being referred to her by my surgeon, who was convinced it was demyelination disease. She sent me for full brain and spine MRI, LP, evoked potentials, the works. All bloods came back clear and all tests were negative. I responded to steroid therapy she placed me on after first seeing me due to her certainty of a dx. I was admitted a couple of times to hospital and told that there was nothing they could do without a def dx. I saw another guy during one of my admissions who said FND, then after a further consultation, I was told definitely not FND, but it was something more organic causing the problems. Due to the problems with my back, he said it might be complex migraines caused from lack of sleep affecting and triggering off different areas of the brain and explaining on going symptoms. He told me to take amytryptilline every night to get sleep and see how it affected my symptoms. Btw, I had a further MRI in December which still remained clear. Relieved that ms wasn’t a factor, but not so convinced on the migraine theory, I still did as I was told and took the amytryptilline as prescribed. Unfortunately, I have since had new numb bits and an ongoing area of numbness, neuropathic pain and cramps, which has worsened over the past few months. I am going back to see him next week, and wondered if anyone has anything in the way of advice about what I should ask. I have a symptom diary, but feel almost frightened that I am going to be sent away in limbo once again, with another potential cause. Something I have noticed though is that the flourescent lighting in certain shops can drain me in minutes, but once I get out and sit for a while I regain composure. I don’t get migraine headaches, just usually a migraine with aura every once in a while which is hormone related, hence usually once or twice a month. But that’s it. If anyone has any ideas I would be really grateful. Thanks for reading the war and peace style question. S 
H, your story is very similar to mine, I tt had 2 spinal surgeries and developed symptoms after my 2nd op, numb left leg and foor at first, then cramps, tingling, pins and needles, weakness, now in both legs plus many other of the usual “possible ms” symptoms. I was also diagnosed with migraine aura(possibly hormone related) for a while but this was discounted after being on migraine meds for a while and them making no difference.
i had an MRi that showed 7+ brain lesions in white brain matter and demylination, but no lesions on spine at that time. My Neuro a tht time dismissed me with anxiety.
Your experience of having difficukties in shops etc that have bright lights is spot on with one of my symptoms, never heard of anyone else having that before so this is very interesting for me.I find it impossible to st in shop queues etc now, i get weak and wobbly very quickly. I saw an ENT professor in january who said my balance issues are due to a multifuntional multifactorial balance disorder which i have now found out is not an actual condition, it simply means that there may be various things causing dizziness and poor balance, however the factors have not yet been identified.
I am now bk on the merry go round of limbo land having seen various consultants for various elements/symptoms and eneding up being referredto a new neuro with a “strong suspicion of ms”.
I am seeing the neuro Monday, I have decided to take a full list of symptoms, daes of severe episodes where I have been sent to hospital/been bed ridden etc (3 in 18 months, and alist of the residual symptoms I have been left with in between the more severe episodes.
I am kind of scared of doing this as i am worried that he will think i’m a complete hypochondriach, but have nothing left to lose now, need help and i’m damn well going to push for it. Whatever this, I want answers and treatments, not being sent to person after person who keeps telling me they don’t understand why my original neuro didn’t pick up on various things.
From what an see, it is possible to have a couple of lr brain scans before anything shows up, so don’t give up, keep on going, you have right to answers and the professionals have a duty of care. After all, its your life and why shouldn’t you expect help with this!?
Good luck with your appt next week, do let us know how it goes. I’ll let you know what my new neuro says on monday. Take care xxx
Having looked up my various symptoms, I seem to recall that Fibromyalgia symptoms can be almost the same as MS symptoms - numbness, tingling, pain etc. but with clear MRIs. I’m no expert but the one symptom that I kept seeing was very high sensitivity to light and noise.
It just rang a bell when I read the above? Best wishes,
PG
Thankyou, both of you for your replies. Bunnythecat, please could I ask what hospital you are under? I seem to think from reading past posts you may be under the same as me, but I am an outreach patient. I have often why he never actually gave me migraine meds as I have recently read that a nerve modifying drug that could help with the residual nerve pain from my two surgeries, is also used as a migraine drug…so why not give that I wonder rather than the amytryptilline? Thanks PG, I know exactly where you are coming from. My mum has been dx with fibro, and you are right, there are quite a few overlaps between us, so it is really a wait and see game I suppose. Thanks again
Hi Anon. my local NHS hospital is East Surrey Hospital but i have private health care so was first seen by a neuro at Spire Gatwick park (he is also a NHS neuro at East surrey too) and I am now under a new Neuro at Ashtead Hospital. As you Anon i don’t think I can PM you but if you want to PM me I can tell the neuros names, the first one was terrible, the one i’m waiting to see has an excellent reputation.
I have also seen a professor at Charing Cross hospital too.
xx
My Mum had Fibro too, but it was diagnosed around the time she also had breast cancer and blood cancer so i’m a bit sceptical that given everything she was already going through that they would be able to identify Fibro, but she seemed to cling on to that dx more than her cancers, maybe because it was easier to accept than the other conditions.
I have thought maybe I have fibro and wouldn’t be surprised if i did but some of the symptoms I have just don’t seem to be par of FM but they are part of MS. Also the Professor at Charing cross ruled FM out.
Its all so confusing isn’t it!
Hi BTC, I thought for some reason you were ip north, must have been confusing you with another member. I read the other day about someone saying a dx was like a postcode lottery. I don’t necessarily mean getting a dx of ms, but getting a dx of something else. Some neuros are quick to jump on the old FND bandwagon, which for some might be an answer, but as far as a dx is concerned, it’s just giving someone a name and no means of treating it enough to get on too of it. When I was admitted to hospital with symptoms that put me in bed, a neuro came round and was quick to label me FND. He didn’t offer any kind of treatment such as the psychotherapy. He sat that and tried to psychoanalyse me, making presumptions and getting them completely wrong, so I had to keep correcting him. In the end he went as I think he could see the way I was looking at him was probably a look of ‘are you for real?!’ I have since been seeing a completely different neuro at a different hospital as a second opinion, as I felt I was just going round in circles. My first neuro was convinced an ms dx would come about and referred me to am ms specialist whilst the tests results came in. My first appointment with him came around and his first words were, that he didn’t know why I was there. Obviously the results were negative, and yes I can now see with hindsight his dismissive ness, but he sat there and said, I have no clue as to what is wrong with you. He said in a letter that my symptoms were highly suggestive of ms but the test results proved otherwise. So he sat on me. The new guy I saw back in December sat and listened and did a thorough examination and ordered a new MRI. Again it was clear, and he had said if it was to follow the migraine theory. I have had a few blips and new symptoms since seeing him last, and old ones have recently worsened. I am at a loss of what to ask, only because I don’t want him thinking I am wanting an ms dx. I just need firm answers or even some kind of look at my meds to see if there might be another way of managing my back pain and migraines. I think I will just go in with a blasé attitude, not go on too much about stuff unless he asks me and suggest a change in meds if he doesn’t come up with it himself. How is your back with the titanium inserts in? Do you get much residual pain? Thanks for listening
Hi Anon, I feel your frustration. If these people could have just 10 minutes in our shoes then maybe they would sit up and listen and not jump to conclusions all the time.
My back improved a bit with the inserts, I certainly got more movement back but alas the pain is now worse as i suffered quite severe nerve damage from the prolapsed discs that they took out. The loss of feeling in my left lower leg and foot was presumed to be due to the back operation, which made total sense at the time, but the onset of the other symptoms since don’t fit with lower back problems. I’m wondering if my next MRI will show disc degeneration and nerve damage to the cervical spine, which would explain some of what i am going through.
One thing we can’t seem to get an answer to is, during my 2nd op there was an “accident” during surgery where my spinal sheath was cut and there was a leak of spinal fluid. becuae of this I wasn’t allowed to move much at all for 2 days and was under 15 minute observations for 2 days! Maybe the cut in the spinal sheath caused some kind of damage to my nervous ssystem, maybe allowing bacteria in? I hate bringing it up with any of the consultants as i think the think i’m just after compo or something, which so isn’t the case, all i want is a reason for why i’m now so ill and getting worse.
Like you and many others here, have just been going round in circles andnot getting any actual “treatment”. I fera i’m going to be like this for rest of my life without ever knowing why.
I think all we can do is keep going, keep explaining what is happening to us, push for tests etc and then maybe one day someone will actually take us seriously.
we can but hope!
Take care of your self, keep me updated,
Bunny xx
Thanks Bunny, It’s nice to talk to someone in pretty much the exact place as myself. Sorry you are still suffering with the pain. Unfortunately I am in the same situation, constant pain from nerve damage which affects my left foot and leg. I have the degenerative discs too, but is too have started to get pain further up, and have wondered if the cervical discs are playing up and causing the neuropathy in my hand and arm. I am under the chronic pain clinic, but it has got so bad the past few days, I am panicking that the disc may have prolapsed further, which means spinal fusion as it will be the third time. Fingers crossed it isn’t. I will let you know how I go on Wednesday. Thanks for your support X
Hi, Well I am pleased to say the neuro appointment went well yesterday. He has stuck to the migraine theory, which is a relief and better than the ms alternative. He explained that the fact that I am suffering so much with back pain from the failed back surgeries, and probably not sleeping well, this is causing the initial migraine, which then, goes onto cause a chain reaction to different parts of the brain.apparently this is what is known as a complex migraine. The numb bits are actually auras, like the visual one I get, but because the chain reaction of stress of not knowing what is wrong etc exacerbating the migraine and so they don’t ever leave, this is why the numbness has never gone. He has prescribed topiramate to take which is an anti epileptic and helps for migraines, but also for pain. He told me to take this with the amytryptilline at night and attack the source from both ends. He was extremely sympathetic saying that the WHO claim that complex migraine can be as debilitating as paralysis from the neck down. Not sure I would accept it as that extreme, but it has knocked me for six over the last 18 months. So hopefully the treatment will work and I get back to getting my life back, as far as my back will let me. But that is now something else I am dealing with separately. Hope you all get some answers soon. Take care and thanks for all your support xx