Dont know which way to turn...

Hi all. I just need a good moan. I feel completly lost in this uncertainty and unknowing. Since my original ‘episode’ sone 2 yrs now…ive been ok’ish. The only way i describe it to friends and family is “it feels like my body has been scared with whatever it was” 2 MRIs showing lessions but non specific and a LP that showed inflamation of the CSF and blood but not the MS band thingies. I went for a Rheumy appt for queery Lupus as I have the rash on the cheeks as well as the symptoms that Lupus and MS share, but bloods were negative other than showing i have a infection somewhere but no tteatment. My urine sampes are +2 and +3 but no infections. Anyway…this last 4 days of this muggy weather and im resigned to bed! My balance is aweful…mainly i think because my legs are so tingly and numb. But I have the most aweful shuffling walk where my legs shake in between steps…its like i dont know how to walk…I look like my 2 uncles that have Parkinsons…its incredibly distressing :‘-( My bladder irritability is driving me nuts! My hand tremors, alrhough to the eye are slight, are proving to be so so difficult to handle. I just dont know what to do or which way to turn. Ive got a routine doc appt on thurs which im.dreading…im just sick of having to repeat myself over and over again. I just want to bury my head in the sand or run away :’-( So so sorry to moan. My husbands working away so i dont have him as a sound board. thx for listening Mandy

Oh love, so sorry you feeling so bad. The hot humid weather did affect me a lot too but feeling a bit better today. Sorry, i can’t remember, have you been dx yet? I guess we have to just keep lugging away at the health professionals to make them listen but I know what you mean about having to keep repeating yourself Hope things improve soon, sending big hugs. Trudy xxx

So sorry you are feeling so rough - is it possible that you have a UTI? This can exacerbate all MS symptoms and a dose of antibiotics may really hep everything. Perhaps a visit to your GP is a good idea? Good luck with it! Teresa xx

Help not hep

Have the neuros suggested anything - such as ADEM, which is a one of attack of inflammation of the nervous system. What were your symptoms at the time of the attack? and which symtoms went and which stayed ? Sorry for the questions but I am in limboland too.


Moyna x

Hi all, thanks for your kind feedback. Ive not been diagnosed with MS due to negative MRI and LP with regards demyelination and cological bands (please excuse the spelling) I was diagnosed with Fybro some 5 ish years ago now (a diagnosis that took 2 years) but this DOES feel different to Fybro. Im aware that my symptoms arent on one side only of my body as in most MS cases (i may be wrong on that) but i do have arthritis in my lumbar, cervical spine and hips especially effecting the left hand side. So when i have an attack or flare like this its difficult to differintiate the two. I dont think i have a UTI because its much more settled today. Plus ive suffered for years and had a procedure to try and stop them…but still every single urine test shows protein and NO infection or treatment. I havent heard of ADEM so i’ll check that out soon…thx for the suggestion Moyna :-). Im pleased to say that the majority of my symptoms have decreased throughout the day…that maybe because of bed rest or significant drop in humidity and temperature…who knows because I certaintly dont! I would say, if they were at an intensity of 9/10 for the last week especually yesterday then I guess they are at about a 5/10 right now. Im just so exhausted by it…physically and emotionally. Thx once again to you all. I hope that you all have a restful evening :slight_smile: Mandy :slight_smile: