Scuse me for venting my spleen, but just so damned fed up,
I’m on day 4 of of my 3rd “attack” in 9 months. i can’t call it a relapse as I haven’t been DX with MS.
But have severe pins and needles, dizzyness so bad keep throwing up, legs keep giving way brain function ridiculous, keep getting so confused. plus alwal pains in arms and legs and my vision is at times almost non existant.
I really need to get back to work but i jst don’t know how i’m going to be from one day to the next. Woke up this morning and for about 10 glorious minutes felt a lot better, but wham there it was, legs gave way, dizzyness hit with a vegence and pains started. Oh to have a normal day! I don’t think i can even remember what it’s like to feel “well” anymore.
Seeing an ONT/ neuroligist professor at Charing Cross on Thursday, he may be my last hope, if he can’t decide whats wrong really don’t know what I do from here.
I have only had 1 MRI, without contrast which showed multiple lesions but the neuro i had then poo pooed anything clinical. if the professor i’m seeing doesn’t offer one do you think it’s worth me asking for another MRI with contrast to see if there are any changes? I’m not great about being persistent with health professionals but something needs to be done, I can’t go on like this!
Sorry fo moaning, I know wveryone here has their own issues to deal with, I just don’t have anyone to talk to about my frustration.
((((Hugs))))). How horrible for you. I hate being persistent with medical people too, can someone go with you who would ask on your behalf and back you up? Axx
Hi Bunny, Great idea from Arwen - please try and take someone with you. I am going to next time because I too am fed up with being pushed from pillar to post. Latest for me surgery for my ankle - they seem to think that this will sort out my balance problems - er no ankle damaged because balance is poor - sort out the root of the problem. You have my sympathy for the frustration I know you feel you are banging your head against a brick wall. Keeping everything crossed for your appointment on Thursday. Sometimes I find it helps to write things down and I have phoned the consultant’s secretary after my appointment and asked questions and she has always got back to me. Maybe you would find this easier. Whatever happens keep us posted.
Hello bunny Why did the Neuro ignore the fact that your scan as shown multiple lesions…doesn’t make sense. Like arwen suggest, try and take someone with you. You need to insist on knowing the cause of the lesions. Hopefully, the professor will be good at his job…unlike the Neuro you saw. Take care
My son is ging with me as my hubby will be away on business. My son is 23 and is really worrid about me so think he won’t be happy to go away without some sort of help/answer.
Blossom, i have no idea why the original neuro wouldn’t tkae the lesions seriously, it was clear from the start that he just wasn’t interested, hw didn’t even do a clinical exam. I went to someone else who was a bit more helpful but diagnoses migraine aura which my original neuro then disagreed with. been stuck between several opinions for a while now.
I feel a bit reassured by the fact that I have now been referred to this professor at Charing cross. My neighbour is a physio who has several MS patients with MS. she says the fact that this professor has asked to see me means that theyare taking my situation somewhat seriously, so hopefully he will be the one to help me.
I will be so upset if he just sends me away with no answers. But got to think positive and believe this professor can help in some way.
If i don’t get help soon i could lose my job and i’m really worried about what this is doing to my family, i so hate being dependant on anyone, it’s just not me!!
Hi - I also had quite a few lesions on mri - but neuro said he thought most were very ‘non specific’ and therefore not clearly indicative of MS (not the right size /shape). He said lesions of a non-specific type are routinely found in migraines, and could also part of the ageing process (although I am only 37 !) .
But symptoms of MS combined with lesions of any type clearly warrant consideration I think. Could you maybe get a second opinion about the lesions on the scan you have already had? I definitely think it would be worth asking for a second mri; if more lesions were to show, it might help move the process forward x
Also, I absolutely agree about taking someone with you. It is such a big help I think, both in terms of emotional support, and also to help advocate for your rights; it really can make a massive difference when you are trying to get your concerns listened to. Hope you get some support and answers soon x
I’m in limbo but I know that I’m in the right direction. I was sick and couldn’t walk 9 doctors shuffled me off to realize my cervical spine was crushed. I was already paralyzing. I was millimeters away from becoming quad. Please push for your needs and DX! One life you deserve the best!
