Hi everyone hope you are all well. I am new to this forum and just getting used to using it (it may take a while lol). It has been an eye opener reading through some of the posts and realising the varied symptoms people experience in relation to MS. My journey to where I now find myself has been difficult but with support from this forum I believe I will learn more and understand my diagnosis a lot better. I was originally diagnosed with Transverse Myelitis in 2005 after being rendered gradually paralysed from the chest down. Misdiagnosis and referral to orthapedic specialist left me wheelchair bound for 8 months. Eventually I was referred to neurology and after MRI and lumbar puncture I received my TM diagnosis and steroid treatment which had me walking within a week. It took a few years to recover to a decent standard and unfortunately a relapse in 2008 rendered me with bladder and bowel dysfunction which I now manage successfully. Earlier this year I suffered a visual disturbance in my right eye. Tests have shown permanent damage to the optic nerve but clear of Devics Disease which was good news. However this 3rd relapse has changed my diagnosis from TM to Progressive MS. Apparently there is a lot of positive hype within Neuroscience based on the availability of new medication which has proven to be 80% effective in preventing relapse. I am hoping to be treated with such a med very soon. Has anyone out there had a positive result with preventative meds? I welcome any advice that may be available. Thank you for your time and patience. Carol Ann x
Hi, just wanted to say hello and welcome you to the forum.
Sorry, I cant answer your question as if doesnt apply to me…dmds wouldnt help me.
I suffered mis-diagnosis too. From PPMS to HSP back to PPMS and now finally defo not MS at all.
HSP is hereditary spastic paraparesis. it has rendered me incapable of walking or standing and I am a full time wheelie and need hoisting for all transfers.
However, life with a disability is still a good life, especially if you have good support and help.
s great to read that you regained your mobility after a spell in a wheelchair..mustve took some determination and stamina. Good for you hun.
Thank you for your response Poll. There really are numerous ailments all similar in symptoms yet form varied diagnosis. I feel very lucky to be in the position I am right now, I fully understand things could be a lot worse. As you say having a support network, friends and family keeps us content and smiling. Thank you again for accepting and welcoming my arrival to the forum. I look forward to many more conversations with you and others. Luv carol x
Hi carol Just want to say welcome to the club that no one wants to join,I’m 6 mths into tests now and still none the wiser. Gray x
Hi Carol, I reckon that you have RRMS (relapsing remitting MS) as opposed to progressive MS. In progressive MS (SPMS and PPMS) there are no drugs available to stop disease progreession. You are definately also RRMS if you responded well to steriods. I hope that you get yours soon.
I too was diagnosed with TM then the RRMS diagnosis came, what a shock. Like you had the steroids and got back to walking again. It does sound lik RRMS you have too. Im taking DMDs and they have definitely helped stop me relapsing for now. Just wanted to say welcome and everyone here is fantastic support. Best wishes heather
Carol …hi I have had TM with a big relapse and am back in limbo. Out of interest was you diagnosis of Progressive MS from MRI or lumbar puncture or both? I am sorry for you it has been a really tough path and you have a very positive attitude. Gill x
Thank you all for your responses. I am as yet a complete novice to the jargon connected to MS type symptoms and diagnosis and i am still awaiting a final diagnosis which i will receive in early Nov. Right now im in limbo and unsure of everything. The information already provided by members has given me food for thought and encouraged me to ask more questions. I’ve heard words being tossed around the doc’s office and not really fully understood. My recent neurology app which was arranged off the back of an optical exam that showed demylation of the optic nerve, confirmed the progression from the spine to the brain. im not yet sure what that means but i will research via the MS society and the advice given by fellow members. Thanx to each of you for your valuable insight. luv carol Ann x
Thanx Moyna what you say has really made me think. Ir makes so much sense in what I’ve researched. I’ve been treated with steroids twice and twice made a good recovery but apparently they don’t work as effectively for visual issues. Steroids haven’t been offered this time. Can anyone else relate to that? Luv carol x
Hi Gray thanx for your welcome. I fully understand the time delay in receiving a diagnosis but for me researching my symptoms opened up many avenues of possible diagnosis. I learned very quickly not to look to deep and after almost 10 years of varying problems and tests im still none the wiser. Its a mine field out there… Trust in your neurologist they’ll get there in the end. Luv carol x
Thanx heather for your response. What you say makes so much sense I’ve realised how confusing this hole process is. There is so muck i want to ask but im not sure i want the answers lol…( I bet you understand that frame of mind)Its great to here the meds are successful and hope they continue to be. you are spot on about the support on this forum… I’m currently in awe of actually being able to talk with experienced people. Thanx again for the welcome Luv carol x
Hi Gill thanx for your response. Your situation is very similar to mine. My TM was diagnosed via MRI and lumbar puncture. Steroid treatment worked really well. Second time round I lost bladder and bowel function which was difficult but I learned to cope really well after a second steroid course and other meds which eased the embarrassing problem. Its this third problem which has changed things for me. With it being visual I understand it to be… But don’t quote me…that this is evidence of demyelation happening in the brain rather than in the spine as with TM. im awaiting confirmation of recent MRI results but as yet I share your limbo lol Luv carol x
Thx Carol… I think you are spot on with the difference between brain and spine. My recent relapse was all about depressed swallowing and breathing function. It was horrible and my GP noted it was areas controlled by the brainstem. You sound amazingly factual about the whole thing, as have I and yet I am so quietly expecting a PPMS diagnosis too. I know life goes on but it really does feel like a big, black cloud overhead chin up eh? … X
Very much so Gill. I’ve got so much info rattling around in my head at the moment its hard to switch off. My mum was diagnosed with RRMS 20 odd years ago and has been very well for it. Her diagnosis came off the back of an eye exam too. I’ve experienced much more difficulties than my mum ever has since my onset in oct 04. Its so weird and complicated to understand. I guess I just want to know exactly what im up against. What’s interesting in what your saying about chest and breathing issues. I’ve recently found out during a random screening that my blood pressure and heart rate are high so have been prescribed meds for both and also given an under tongue angina spray. My father died at 42 of a heart attack and I guess docs are concerned enough to refer me to a specialist for CT heart scan. Also im awaiting a lung function test but need heart results first apparently as the test could cause cardiac issues. This latest relapse seems to have stemmed from a virus I picked up in Spain last Oct from contaminated water after horrendous rain caused flooding. The virus went straight to my chest and honestly hasn’t left yet. I just wonder if that was the catalyst or not. Time will tell I suppose so I’ll take your advice and keep my chin up. Carol x
Omg the story gets weirder. I was on a golfing break and was the only member of the party to swim in an outdoor pool. I got the most awful chest infection that turned into TM… Then had a cpl more relapses, but MRI clear. Waiting fresh MRI results now…what a bummer. We are a year apart…I was born 68 x
Wow how similar is that Gill… Its all really weird but it does make you wonder what the hell its all about . I’ll tell you something… What a difference it makes talking to people who are in the know about the illness. Are you of Celtic origin by any chance?
Carol… When you say celtic it means to me Welsh…some definitions include Scotland. My grandmother was Welsh and I lived for 10 years in Scotland… Let me know if it means Welsh to you? Yes … Talking to others kept me sane when I was housebound drinking out my Tommy Tippee cup, some wonderful souls trapped in their houses chatting online x
Hi Gillian and Carol, I am quite similar to you both but slightly older (nearly 49). I had an attack of l’hermittes, weakness, numbness, fatigue etc in 2008. GP said virus and I thought it was reaction to flu jab I had a few days before. A few months before that attack I kept going over on my right ankle. Anyway I recovered (95%) after 6 weeks. Then a year later started to notice slight foot drop after long walk. This has got worse and worse. Had MRI in 2011 lesion was seen on spinal cord (neck area). Neuro DX Radiation myelopathy (from treatment I had in 1990). Tried steriods with no effect. In 2012 saw different neuro (suspected progressive MS) ad another MRI and LP. Lesion still seen and LP was clear for MS bands. He now thinks I had myelitis or something like that BUT from what I have read that does not present as progressive. Anyway on the scan in 2013 the lesion from neck had gone/resolved. I am beginning to wonder if he was looking at the right scan!
Have both your LPs been clear?
I am beginning to wonder if I will ever get out of Limbo!
Its all very interesting im Scottish but have been in Yorkshire for the past 12 years. My neurologist says that those of Celtic origin which in my view are Scots Irish and welsh are more prone to MS. I believe that Scotland has more sufferers per 100 than anywhere else. i was just wondering if anyone else has heard this…its my mental state that’s keeping me housebound lately. No confidence at all to do anything on my own. Nerves are shot Gill.
I’m afraid you are right, and Northern Ireland is as bad. There’s a strong suspicion that it’s to do with not enough Vit D from sunlight during childhood, and that this raises a person’s vulnerability to developing MS later on if an unlucky witch’s brew of other factors happens to come together in exactly the wrong way.