Help needed an new to this site

This is the first time I have posted on the forum but hope someone can offer some help. My husband was diagnosed with ppms 4yrs ago, it’s been a long road but we were starting to accept things and getting on with life as best we could. Just before Xmas he suffered heart problems and was admitted to hospital where they did various X-rays and scans, they noticed on his X-ray he had enlarged lymph nodes on his lungs and started to suggest he had sarcoidosis which mimics ms. This just threw us completely. He had a lung biopsy which didn’t show sarcoidosis but they want to do a more invasive biopsy when they have his heart problems sorted. We saw his ms nurse on Monday who has now told us his neurologists wants to reacess his ms diagnosis with further scans. She said his original spine MRI showed no lesions but his lumbar puncture showed positive for ms. This is all going to take time and left us totally shocked that they may have got his diagnosis wrong.

Hi and welcome to the board. I am Don known as hoppity by friend and family from the days when I could walk baddly but nown in a wheelchair. I have never heard of sarcoidosis so dont have any experience but I can tell you this MS is a reel wheeze such fun you aint got a scooby as to what its going to give you next, I love it but after 20 years I am a tad fed up with it. I hope they get your hubby sorted have fun and keep your chin up, I find laughter best it confuses the heck out of people who think why on earth is he so happy. Dont let it get you down


Welcome to the forum both of you, friendly little bunch here.

That has certainly thrown a spanner in the works, especially as you had both come to terms with the diagnosis. I have heard of sarcodosis as when I worked my boss had it years ago, and yes, I believe it does mimic ms.

I think all you can do is go with the flow, see what the neuro has to say, once your hubbys heart problem is sorted, but try not to stress (easier said than done, I know) but stressing helps no one.

Stay on the forum and please let us know how things go, take care.

Pam x

Over the last number of years I have heard of about 4 people who have been given a wrong diagnois of PPMS.

In 2005 I had numbness pins and needles etc. After a clear MRI scan I was told that I had ME. In 2008 I had a sort of attack of more numbness fatigue and jelly legs. GP said it was more ME stuff. Then foot drop developed and I saw a neurologist . Had another MRI scan and a spinal lesion was seen.

In 2011 I was told I had delayed radiation myelopathy from treatment I had in 1990. In 2012 I saw another neuro who said I had either got SPMS after Benign RRMS or PPMS! BUT he then said he couldnt put it down in black and white because my LP was negative for MS. After another scan which showed the spinal lesion had resolved he then said I had a one off attack of myleitis.

So I went back to first neuro who still insisted that I had radiation myelopathy. I then asked him how could I be the only one who could get this - there are no other records of people getting it from the type of radiation I had. He then said it might have something to do with vitamin defiecencys. Also the spinal lesion had returned.

The new theory is sub acute combined degeneration of the spinal cord due to B12 deficiency. I have just started intensive B12 injections this week. If that is the case the lesion will resolve but I am likey to be left with some problems as it has been going on so long without the proper treatment.

RRMS is far easier it dx as less things mimic it.

Moyna xxx


Hi Woodylarkin and welcome to our little gang. I can only imagine how awful it must be to get used to one diagnosis only to be told it might be something else. Of course there’s a good chance that after all this hassle your hubby will end up with PPMS dx anyway! If I were you, for now I would continue accepting the PPMS dx. With the positive lumbar puncture I think it’s still very much in the mix. When and IF the doctors change the dx deal with it then. A case of crossing bridges when and if you come to them. I hope your husband will consider coming on and introducing himself. Tell him we’re a friendly lot and he’s very welcome here… as are you. Take care, Pat xx

Thank you for your replies and yes we are just going to have to be patient and see what comes of all this at least you can get support on here from people who totally understand what you are going through.

Hi Woodylarkin and welcome to the site. From what I was told, a positive LP can be accepted as a diagnosis of PPMS so if I were you if just continue to take medical advice as it’s given but maintain your contact with your Neuro and ms nurse but any treatment that may improve symptoms should be grabbed with both hands. I was also told I didn’t have ms after it was first diagnosed but following my LP it was confirmed along with my symptoms caused by a spinal cord injury. Unfortunately neurological diagnosis is very difficult as the symptoms are so varied and non specific.

I hope you get answers, please keep in touch and let us know how you get on.

Cath xx