Hi, for the last year my husband has shown all the signs of MS, he has had 3 MRI scan’s and diagnosed with a clinically isolated syndrome, he has an inflammation at base of brain/ top of neck. he had a lumbar puncture 3 weeks ago and the result is clear, even though he still has symptoms, and new sensations, around his body, the neurologist has advised no diagnosis back in 6 months, he has taken amatriptylne and Gabapentine, which he is now refusing to take due to side effects. My husband has decided he cannot cope and has left me and his young son, as without diagnosis he feels he is going insane, we have given all our support please can someone advise where I can get him some further help, I am sure it is the illness as to why he has left trying to stop us from seeing his deterioration and bad moods. My husband’s family have a history if primary progressive MS. can anyone give me some advice to help him please I am worried for his well being.
Your post is so sad. I think sometimes the healthcare professionals fail to appreciate the devastation it causes to peoples lives when they blithely tell us to ‘come back in 6 months’ when we are desperate and scared wanting to know what is wrong with us. Unfortunately, as I am fast learning, there is no quick and easy route to a diagnosis, particularly when scans etc are not showing anything obvious.
We can all only deal with this in our own way as best we can, sometimes better than other times. There are bound to be periods when it gets us down. It is hard to know what to say to you about persuading your husband to come home, other than keeping communication open, constantly assuring him that you and your son need him, that you believe, support and will love him whatever and that you will find a way through this together, be the result good, bad or indifferent. I am afraid I know little about getting further support, being quite new to all this myself. Perhaps one of the others with more experience could help. Only thing I can think of is perhaps your GP.
Sending you very best wishes and hoping you find a way to get through this tough time.
Just to add, I also have a clinically isolated syndrome diagnosis at the moment with the come back in 6 months thing also, but symptoms are continuing, ongoing and worsening, so it would seem this is the standard procedure when a definite diagnosis is unable to be reached. So you can assure him he is not alone.
Do hope some of this helps.
Sorry to hear your husband is so low. He is definitely not alone in his journey and it can’t be frustrating hard for him and those close to him, but there is help out there. I was in a similar position for nearly two years initially be diagnosed with transverse myelitis. I to had lesions on my upper neck and horrible symptoms. My lumbar puncture was positive, but there is a small percentage that don’t come positive. It was a case of pushing, pushing and more pushing with the neurologist until I finally saw a MS consultant who diagnosed me with PPMS after a progression.
Iam sure your husband feels low but please tell him he’s certainly not alone. It does take a long time to be diagnosed if it is MS and from my own experience don’t give up with the medication as it does take a while to get the right one to suit you. If gabepentin is not suiting him there is alternative , pregabalin is one he could discuss with his GP.