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if it isn't ms... any ideas?

was referred to neurologist in november as gp said we needed to rule out ms and seemed out of ideas what was causing my symptoms. went in march. was told i had brisk reflexes and there were some sensory things going on e.g. sense of temperature screwed up. everything else was normal. had mri a feew weeks ago. got a letter today that there was nothing remarkable in the mri, no evidence of ms and have been discharge from neurology. have had blood tests for b12, iron, thyroid, diabetes. have had to give up my job, in process of becoming self employed because of all this, so finance becoming a struggle. on occasion ive had to send my little son to stay with elderly granparents during the week because I was unable. with no support and no answers am wondering where to go next with this. any ideas if it isnt ms then what is it? some days weeks im fine. others am not. have experienced range of things at range of levels including dizzy, fatigue, lightheaded, tingling, pins and needles, numbness in hands and feet, pain. at times the numbness has affected my ability to drive or type. the faftigue has sometimes been so bad ive been completely useless. Ive made changes to diet and lifestyle and its helped but I still dont feel able to hold down full time work, have other children or even just exercise/socialise like a normal healthy person my age. Would appreciate any ideas as apart from my husband i don’t have support or any understanding about my symptoms and so on. I would love to persue alternative health routes as don’t seem to be getting anywhere with traditional understadnings but given the worsening finance situation that doesn’t seems likely. nor does making it to my brothers wedding next year!

Hi Dashi, i’m kind of in the same position as you, despite many symptoms and even 7 lesions showing on my brain scan my neurologist dismissed MS the first time I saw him, even though i was actually refrred by a neuro surgeon who was concerned about the resulys of the brain scan. Si i’m no further forward, still have bad symptoms, but not getting any treatment and trying to carry on with my life but all this his having a devastating effect. I have been refrred for some various complex blood tests but if they don’t show anything i’m stuck. What i have decided to do is tackle one symptom at a time via my Gp and get refrred for tests in thesr areas, so going to see an ENT specialist about my dizzyness/vertigo. Going back to the neuro surgeon about the loss of feeling and weakness in my left leg 9this was originally thought to caused bu spinal surgery last year but surgeon ruled that out). Also, I have found out that a lot of these symptoms can be some lesser known and more serious symptoms of menopause. It’s a bit early for me to be in menopause but some peole do start it early so I am going to see if if there is a test for this. I found this info on the net, maybe it’s worth looking into? http://www.34-menopause-symptoms.com/ Apart from all that i have started gentle pilates to try and improve strength and i’m generally just trying as best i can to get on with life and not worry, easier said than done I know! Also quite a few people on this site have suggested i get a 2nd opinion. I was unlucky with the neurologist i had, he just didn’t seem interested and didn’t want to listen. i really hope you can get some answers, don’t give up, trust your gut instinct, you know when something is not right and have a right to treatment, whatever it may turn out to be. Good luck xxx

Thanks for your reply. At least we are not alone in all this! Makes me feel a bit less crazy to know that. Apart from lifestyle changes I really don’t know what to do. I will make an appointment to see the GP and see what ideas he has. Afraid people will think I’m imagining all this and everythings kind of invisible so sometimes no one around me would even know when I’m experiencing anything. but i know myself how I feel and the limits its putting on life and you are so right - we do have a right to treatment or at least some kind of support or advice rather than having to muddle through ourselves. don’t think there is much avenue for 2nd opinion unfortunatley unless i was going to travel really far. i think my neuro was kind of the head honcho around these parts. would like to see the detailed report though. can’t believe they found 7 lesions with you and still not giving you answers. well good luck to you too and thanks. xo

Hi and welcome,

You said that you had brisk reflexes. This is usually a sign that there is something going on in your spinal cord. Did you have an MRI of brain and spinal cord? It is just that I know people have been discharged if their brain scan is clear when in fact there was a problem with the spinal cord which was not checked. If your spine MRI was clear too then MS would be extremely unlikely. Other things like B12 defiency, Lupus and even ME can give symptoms like you mentioned. I suggest a visit back to GP is a good idea.

Moyna x

Hi, I also think a visit to your gp would help.

If the neuro has discharged you and you are still having problems, then there must be something wrong.

Hope the gp can offer some other ideas.

pollx

Thanks for the suggestions. I did go to the gp today but hadn’t seen the post about possible lupus or me so I didn’t ask about that and the doc never mentioned it. B12 was already ruled out as checked before. Anyways the gp reiterated the neurologists letter and said it clearly wasn’t anything serious, he can’t think of anything else it could be and sometimes medicine is just like that so bye and all the best. i lingered on hoping for any kind of idea or support. so then he said maybe the fatigue is a post viral something or other and suggested I go home and look it up! I would have thought it was his job to inform me about it? where am i even supposed to look it up? and he advised me to always keep doing things to help the fatigue. well I have tried again and again pushing through the fatigue and from personal experience thats when i get into real bother and end up completely useless and not even able to hold my head up, whereas I’ve been finding lately if i rest asap after recognising signs of it, even for a short time, it sometimes helps and I can keep going and ride through it. i might have told him that but was trying not to burst in tears or he would really have thought me a chore. and yes, i did have brain and upper spine scan. am glad it isn’t ms but just wish i knew something. and incase you think im at the gp all the time bugging him i have been 3 times in the past 2 years before today. the first time he said maybe you have depression and that was it. the 2nd time he did the bloods for various things and the 3 rd time he referred me to the neuro. and now he is clearly done with me!

Thanks for the suggestions. I did go to the gp today but hadn’t seen the post about possible lupus or me so I didn’t ask about that and the doc never mentioned it. B12 was already ruled out as checked before. Anyways the gp reiterated the neurologists letter and said it clearly wasn’t anything serious, he can’t think of anything else it could be and sometimes medicine is just like that so bye and all the best. i lingered on hoping for any kind of idea or support. so then he said maybe the fatigue is a post viral something or other and suggested I go home and look it up! I would have thought it was his job to inform me about it? where am i even supposed to look it up? and he advised me to always keep doing things to help the fatigue. well I have tried again and again pushing through the fatigue and from personal experience thats when i get into real bother and end up completely useless and not even able to hold my head up, whereas I’ve been finding lately if i rest asap after recognising signs of it, even for a short time, it sometimes helps and I can keep going and ride through it. i might have told him that but was trying not to burst in tears or he would really have thought me a chore. and yes, i did have brain and upper spine scan. am glad it isn’t ms but just wish i knew something. and incase you think im at the gp all the time bugging him i have been 3 times in the past 2 years before today. the first time he said maybe you have depression and that was it. the 2nd time he did the bloods for various things and the 3 rd time he referred me to the neuro. and now he is clearly done with me!

Hi, GPs are really out of their comfort zone with neuro stuff. My own one has admitted that several times to me. The neuros cant do anything either if scans are clear. I really dont know what else to say. I am in limbo too although I do have one lesion - noy enough for an MS dx.

Take Care

Moyna x

Hi dashi, I’m not sure what your symptoms are but if your temperature control is all over the place, it may be with Gurgling autonomic dysfunction. The autonomic nervous system controls body temperature, heart rate and blood pressure and it’s effects can be very debilitating. Hope you get some answers soon hun.

Mags xx

thanks. i went to gp with suggestions. he did seem to think about them and is doing some tests to rule out lupus as although he doesnt think i have that said it would be worth looking into incase because of my hair loss. but basically he told me its great news that i don’t have anything serious and that he was out of ideas as to what else it could be and sometimes meidicne is just mysterious like that and you just have to live with things and don’t find out what it is. anyway, i passed on the suggestions you gave here and he has diagnosed me with me and when i asked for info said to go home and look it up on internet to learn how to self manage it. anyhow I did that and found there is a support group near where i live and i can meet with them next week. i guess the doc cant read minds and doesn’t know that my exposure to me in the world is prob one of the most severe cases ever - my younger cousin who has always struggled to have any quality of life, and is pretty much housebound and has been severly disabled all her life! i didnt tell him that and he clearly didnt think its a condition you need help with. well everyones experience of things are different and my condition is clearly much milder that hers so hopefully I will be able to manage it happily and learn to accept and live within my limitations… all life is beautiful after all. certainly dont feel like ill be going back to the gp about any symptoms though. anyhow, thanks for your support here even though I didnt even ms and for your suggestions. appreciate it so thankyou. hope you all find the answers and support you need. xo

Hi Dashi, Don’t mean to sound like a scratched record (posted earlier on this site) but have you considered CFS/ME?. As written before the symptoms are similar to MS and I know my temperature control has been disfunctional for a while (Does anybody else blow hot and cold). My reason for keeping on coming back to the MS site is because I haven’t had any tests to rule out MS and was diagnosed as borderline CFS/ME, but as the symptoms are far ranging in both conditions it might be worth a look, the MEAssociation website is a good place to start. The brisk reflexes is something I am unaware of with CFS/ME but I do know that I had something similar when I had a prolapsed disc in my lower back so maybe it is something that is seperate from the other symptoms anyway. Even if you feel CFS/ME does not cover your symptoms at east then you’ve definitely ruled it out. Also most people have a pre conceived idea as to how CFS/ME starts and progresses and the symptoms people have but flu is not always the start, I myself have never had a sore throat so had to rule that out as a symptom. I hope you find the answers you are looking for and wish you all the best. Liz