Hello everyone! Im SO sorry I havent contributed for ages: a mixture of fatigue and lousy organisational skills!
Please, please can someone help me? To cut a long story short, Ive been refused to take part in a drugs trial because I dont have the “right” number of symptoms. My legs suddenly refused to work almost 2 years ago, and Ive been diagnosed with PPMS because Ive had no remission since then. My really lovely consultant, (yes, truly!) diagnosed me 14 months ago as having MS, although hed only found 1 small lesion on my brain, because he thought it was the only credible diagnosis. When steroids didnt work, and my legs were getting significantly weaker, he amended my diagnosis to PPMS. He wanted me to try drug therapy to try to halt the spasticity, but the consultant he referred me to wouldnt accept me as I didnt have sufficient lesions. (Sorry!). He then wanted me to have a Visual Evoked Response test, which I did, and today I got a very short letter saying the results were normal. Now I`m scared it might not be MS, that I might have been making everything up, or it might be something else - such as…???
I really am panicking now, and feel more depressed than ever. Has anyone else been through a similar experience? Is it likely to be given a misdiagnosis of MS?
I have been running around with several diagnosis’ for a few years -
such as
delayed radiation myelopathy, possible SPMS/PPMS and now possible 'subacute combined degeneration of the spinal cord due to pernicious anemia. At the moment I am on B12 injections every other day. I have spasticity in one leg which make walking difficult and have a lesion on my spinal cord.
To get a dx of MS (any type) you need to fullfill the McDonald criteria. With only one small lesion you would not fill that. Did you have a lumbar puncture. Though even with a positive LP you would need more lesions.
Another user on this site Boudica (Poll) had a PPMS dx for 7 years, then it was changed to Spastic Parapesis of unknown cause. It was changed after her MRIs and LPs were clear. You should PM her as I know she would only be too happy to share her story with you.
I have a clear LP and not enough lesions to get a confirmed diagnosis. I reckon your consultant was too quick in giving you the diagnosis.
Regardless of Dx, ask for neuro rehabilitation if you can. I had quite a long wait for mine but he was pretty thorough. He’s changed the doseage of one of my meds, suggested painkillers to my GP, referred me to orthotics & for FES, and precribed me something else to try for spasticity.
As a likely PPMS’er, I finally feel like I’m getting some solid help, yes I’ve had physio but that’s it.
My MS nurse sits near the rehab doctor so I’ve emailed her following the appointment, and she spoke to him and things get sorted!
Try not to worry, push your neuro for some answers tho
Hi Faith, did you have a lumbar puncture? If yes, and it was positive showing oligoclonal band, then you have MS. If you didn’t have one or it was negative, you could request one now… Or you could just take it that you have been dx with MS and leave it at that. Neuro’s do sometimes disagree but I wouldn’t let it worry you…what’s that expression, if it walks like a duck and it quacks like a duck, it’s a duck. Take care and nice to see you, Pat xx
Hi! Many thanks for the replies, particularly to Snow Leopard, who really made me feel better about myself! My MS nurse was also very helpful, so Im less upset and confused. Funnily enough, I think being upset made my symptoms considerably worse, and Ive been shuffling along like a very old and arthritic woman, as well as so tired I can barely see! MS is quite a hazardous journey, isn`t it?
Faith I also had many tests and different diagnoses before ms. It was a long, tiring stressful road. I had a very broken body, not enough lesions and a normal VEP too but my lumbar puncture was positive. If ask your Neuro to do one so you can get a proper diagnosis, I really feel for you.
Hi Faith I posted on here a few weeks ago regarding my husband who was diagnosed with ppms 4yrs ago he is going through exactly what you are at the moment. After having heart problems in December and having various X-rays on his chest they spotted swollen lymph nodes on his lungs and have mentioned a condition called sarcoidosis which mimics ms. It threw us both completely having accepted his diagnosis and getting on with things as best we could. He had a positive lumbar puncture when diagnosed with ms but now he is under heart and lung specialists and his neuro wants to reacess him. It’s all very frustrating and just a waiting game but all this stress makes his symptoms so much worse. Hope you get the answers you want very soon.
I was diagnosed 18months ago, no problem at Westminster hospital. Then transferred to Basildon so nearer to home, so I don’t have to travel so far to see ms nurse, as it may be regular, iv seen her twice? When you go to see the neurologist, she says see you again in 6months, before iv even said hello, what chance have we got, I still think iv just got a bad back, I’m injecting interferon 3times a week, to reduce the relapses?? Iv never had a relapse, don’t know what one is? Just slowly getting worse, right leg goes dead, lower back feels numb, real struggle to get up stairs, like climbing a mountain, lol, I keep saying to the wife, they don’t understand, she says, they have done the tests, you don’t understand, still think they are wrong, still every cloud has a silver lining, can’t walk far but can park anywear I like. Good luck, graham.
Hi Graham, have they actually told you it’s PPMS? The reason I ask is that the drug Interferon is not used for PPMS… it simply doesn’t work for it. It’s used for RRMS to reduce relapses and sometimes for SPMS when there are still relapses (that is Secondary Progressive and people with RRMS can become SPMS meaning that their MS has become progressive). Don’t worry if this all sounds too confusing… I’ve been diagnosed 6 years… we all learn this stuff eventually. So first of all I think you need to find out exactly what type of MS they have diagnosed you with… or they might still be trying to work out which type. I have read of neuorologists prescribing a drug for RRMS to see it works or not, in order to help them work out which type you have. Secondly, I have to say it’s very normal to think they have made a mistake with the diagnosis. Sorry to say but it’s a form of denial and most of us go through it at the beginning. Did you have and MRI showing lesions on your brain and/or spine? Did you have a lumbar puncture showing ‘bands’ in your spinal fluid (sometimes just referred to as a ‘positive LP’)? If you say YES to both those questions, then yes, you have MS and the diagnosis is correct. If answer is NO come back and tell us how you got the diagnosis. Sometimes they will do it without the LP… but the MRI is standard. Sometimes it really helps to talk to a professional to help get your head round this. You could call the helpline (number at bottom of this page) or see your GP and ask for a therapist referral. This isn’t a sign of weakness Graham… it’s a hell of a thing to accept and many of us need a bit of help along the way. Would be interested to hear exactly what they have told you. Also want to say welcome… we are a very supportive gang on here and you have certainly found the best place to start coming to terms with your diagnosis. All the best, Pat xx
Pat has given you excellent advice. I just wanted to agree that denial is a normal stage, not a sign of weakness. Months after I thought I’d accepted my diagnosis I kept wanting to see my Neuro and make sure he was correct. I wanted to see the proof for myself, certain it could be something else they could treat. I was a nurse so I’d been adequately reassured that I had PPMS when I was diagnosed so I knew it was irrational of me, but I didn’t want to accept it.
I’ve only told you this as some people think they’re weak when they grieve over the loss of their healthy bodies but it’s normal, you don’t just go through the grieving process with a death, any unwanted changes in your life can necessitate the process.