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Advice please from those who know

Sorry to come on your page but I’d like to ask those who have experience and knowledge . I’ll try and keep it brief. I was diagnosed last year with transverse myelitis and told it may be the onset of progressive MS. I had one lesion on the c2 and a possible second on c5. My symptomes were walking difficulty balance and numbness in my legs along with a nightmare burning and mild spasticity in my legs along with major bladder problems. Over the last year nothing has changed with walking getting more difficult and weakness in my legs. I had further test of the evok thing showing a delayed response which was told was due to the lesion. I had a lumbar puncture about two months ago which was positive for the O bands so I was put in for another set of MRI scans. I have today got the results which showed no brain lesions and the one in my spin has gone with no sign of inflamation. At present my mobility is still the main issues along with bladder, balance and the burning pain. I suppose my questions is where do I go from here and is it the case of getting on with it or is this a similar story. Any advice or similar story’s would really help. Many thanks Jason.

Hi Jason, firstly, you are very welcome on here. I’m quite surprised that you haven’t had an MS diagnosis (dx) after getting a positive for O bands from LP. Normally if there are symptoms of MS but the MRI isn’t positive enough to make the dx, they give an LP to make sure. In fact I was dx in exactly that way. Sometimes there are no brain lesions and only spine lesions. I think this is the case for some people with PPMS (although not everyone… I have only got brain lesions). When are you seeing the neuro next? I think if the neuro is still not going to give you a dx of MS you might think about seeing another neuro for second opinion. I know this is not always easy on the NHS. It will really be a case of seeing if your GP is willing to do another referal. Wait until you see your neuro first & see what he/she says. As you probably know, O bands in the spinal fluid shows that the immune system has been active in the central nervous system but not in the blood (that’s why they take a blood test at same time). With MS symptoms such as you have that would normally give the dx of MS. Hope you are seeing the neuro soon and can get an explanation of why they are NOT dx MS. In meantime, you are very welcome on this board and I hope that coming on here will help you. It is extremely frustrating to have MS symptoms but no dx and we all understand that. I waited over 2 years for a dx after being misdiagnosed with ME. Hang on in there & let us know happens. Pat xx

Hi Jason,

First of all did you TM start as an obvious attack - ie did your symtoms come on quite quickly?

In 2008 I had an attack with numbness weakness, l’hermittes etc. It passed after 8 weeks or so and the GP thought it was a virus. I did not see neuro at the time. Then in a year or so later I started to notice spasticity slowly developing. This progressiv got worse and I saw neuro in 2011 and lesion was seen in C4/C5 area. Brain scan was clear. The neuro said it was due to radiation treatment I had for cancer in 1990. In 2012 I saw another neuro for second opinion and he thought it was progressive MS. My LP was negative for Obands and lesion was still there on MRI scan. In June 2013 I had another MRI and lesion was gone yet in October 2013 it was back!

With TM what I have been told that it can take months/years for the total effects to be seen. Even though symptoms seem to get worse it does not mean that the original problem is getting worse - it takes time for the original damage to become evident especially when spasticity is to blame. Spasticity evolves over a long time, this wil cause your balance to get worse as well as your walking.

I am still in limbo and spasticity of my right leg is my main problem. I have tried bacofen and Tizanidine but they dont seem to get into my CNS to have effect so I am about t try a baclofen pump.

Moyna xxx

Hi Jason Like you, I have shown no brain lesions, just a spinal swelling T4-T5. This swelling, or whatever it is, runs along the centre of my spinal cord, but moves slightly and changes shape between each MRI. So I developed similar problems with balance and walking ( I can do neither now). I finally got a PPMS dx after an LP. The only advice I can offer while you are ‘in limbo’ as you describe it, is to try hard to keep as much muscle tone in your legs as you can. Get physio, if you haven’t already, and try to adhere to a regular stretch & exercise routine.

Hi Jason. Welcome to the site. Like Pat I’m really surprised they didn’t dx ms after your LP. I have no spinal lesions but do have them in my brain but have a spinal cord injury so they didn’t want to dx ms, in case the problems were caused by that. They thus did an LP which was positive for bands and told me it was definitely ms, that the bands were proof. I’d definitely see him again or get a second opinion as your situation is completely at odds with what I’ve been led to believe.

Please come and visit regularly and let us know how you get on.

Cath xx

Hi Jason, Like Pat and Cath, I too am very surprised that you didn’t get a dx after a positive lumbar puncture. Limbo land is a nightmare… I feel sure that GPs must know this, so, although I know its not easy to ask to see another consultant, if it were me I would certainly talk to my GP about it. Let us know how things go for you. Best wishes, Nina x

Many thanks to you all for your advice. Just a bit more . My symptomes came on slowly with lower back pain after Xmas last year which got worse along with noticing my left leg dragging after walking a distance. I then noticed I couldn’t run and finally went to gp for some physio. It’s was here I was pushed around after they noticed which I was finally told was clones in my left leg and developed to both. So over six months things went down hill. There we’re however problems for years with bladder and back pain but not sure if connected. I am totally amazed on my last MRI to be told no lesions on brain and the one I previously had gone. So how can the o band be present two months earlier and ten months after previous MRI. They either have looked at someone else’s scans or is this totally weird. The letter says on the area of previous lesions there is no sign of shrinkage which having done a bit of reading I think this means no scaring. I am seriously thinking of getting another opinion or private new scans just to put my mind at rest that the nhs has not made a mistake. On my last neuro visit I was told to get a blue badge and my walking and pain is still here so where now. Sorry to rant but just got home from work having got through the day. A good day tho. Medication is baclofen, pregapentin and tegretol. Next neuro appointment not until October and still awaiting another urology appoint which is to be honest a nightmare and I am on 43. Sorry still ranting but really appreciate your advice. Jason.

A lot of this sounds similar to my progression ( sorry to be the bearer of bad news). I started with extreme lower back pain and noticing difficulties walking- a strange feeling in my hips. Thing was, I’d just started treatment for lymphoma, and my tumours were all below my diaphragm so the assumption was the back pain was connected. (Don’t worry , I’m not suggesting for one second that you have lymphoma). Anyway, I made such a fuss and they gave in and did an MRI, finding what they called a ‘syrinx’ in my spinal cord. The haematologist said not to worry about that, he was too busy trying to save my life. Which he did! Trouble was after I’d finished chemo and be declared in remission, I started getting physio to help me put back the muscle I’d lost. I did muscle up and fill out again but still my balance and walking were getting worse. (Though the bad lower back pain had gone.) So now seeing neuros, they labelled the condition 'paraneoplastic myelopathy, ie ‘something which looks like a tumour, but isn’t malignant, in the spinal cord’. Limbo. All this happened through 2010-2011. It took until January this year to get to PPMS. I’d been doing stretches every day and exercises most days, but by 2012 I was in a wheelchair. Sorry I’ve gone on a bit, but at least you know your experience of being in a fog where the medicos seem clueless is not unusual. Keep doing physio, keep positive if you can. Kev

Hi Jason, are you sure it didn’t say no signs of NEW lesions? I ask because I would think that ‘no sign of shrinkage’ means that the lesions are still visible and of the same size… ie they haven’t shrunk. Some of the older MRI machines don’t show lesions up as well as the newer ones… so it may well have been the machine. I would question the ‘no sign of shrinkage’ bit of the letter if I were you. Write to or email the neuro and ask what that means… does it mean that lesions from previous MRI are still visible? There are others that don’t have lesions showing but get positive O bands… and that plus symptoms would normally give a dx of MS. I must say that it is very confusing… unfortunately many have found neuro’s not the best communicators in the world… although some of very good of course. If you can afford private consultation with a neuro it would be a good idea… but before you consider that see your GP, explain exactly why you are so concerned and ask if he will refer you to another hospital. In meantime, see if you can find out if there is a good MS specialist (some neuro’s specialise in MS) that you could get to… try to find others with MS in your area (a group, online, local paper) and see if you can get recommendation of a good neuro. Best of luck. Pat xx

Jason you’re in an awful place, we can all sympathise. I was your age and your story is so familiar, lower back problems then bladder and bowel issues etc. Limbo is very unpleasant but if I were you I’d see the gp. I don’t understand why a positive LP is being ignored, tell him you need a dx for your own peace of mind. Once you get that things fall into place.

I had an awful time trying to manage without any help but as soon as I got my dx I had access to MS and Continence nurses, an Occupational Therapist and a Neuro who are all wonderful. I got my house paid off as I had critical illness cover in my insurance and my OT has been so helpful with getting aids to make life easier. It’s so important to get answers. I’m sure if you explain that they’ll help you. I’m not sure if you’re aware but you may qualify for Disability Living Allowance or Personal Independence Payments if you’re struggling with mobility or personal help, contact the benefits agency, that money really comes in handy to make life easier. You can even get it if you’re still working, I’m not sure what your situation is but it’s not means tested.

Good luck and as before, let us know how you get on please.

Cath xx

Thank you for all you advice. I was coping quite well and remaining positive that I would soon get some help but at the moment it looks like the goal post have again Been moved. I will be e mailing the neuro tonight try try and get some answers and will book an appointment with my gp. Again thanks for your advice which is really appreciated having been coping along for the last year. Jason.

Don’t try and cope alone Jason, there is always someone around on here to try to help and offer support. Really hope you get some answers soon. Nina x

Hi all and again a thanks. I have e mailed the neuro asking some questions mainly to explain the results and why if everything was pointing towards a dx and o bands positive only two months ago why is it now showing my brain has no lesions and the cervical spin is normal. Her words . Cervical spin normal . Therefore there has been no shrinkage to the spinal cord and the signal change that was previously seen is no long identified. What does this mean? I have contacted my gp and he will be calling me Friday. There is a ms consultant nearby so should I request to see him. Seriously confused so if it looks better why are my symptoms still here and have got worse over the last year. Thanks again Jason.

Hi all and again a thanks. I have e mailed the neuro asking some questions mainly to explain the results and why if everything was pointing towards a dx and o bands positive only two months ago why is it now showing my brain has no lesions and the cervical spin is normal. Her words . Cervical spin normal . Therefore there has been no shrinkage to the spinal cord and the signal change that was previously seen is no long identified. What does this mean? I have contacted my gp and he will be calling me Friday. There is a ms consultant nearby so should I request to see him. Seriously confused so if it looks better why are my symptoms still here and have got worse over the last year. Thanks again Jason.

Hi all and again a thanks. I have e mailed the neuro asking some questions mainly to explain the results and why if everything was pointing towards a dx and o bands positive only two months ago why is it now showing my brain has no lesions and the cervical spin is normal. Her words . Cervical spin normal . Therefore there has been no shrinkage to the spinal cord and the signal change that was previously seen is no long identified. What does this mean? I have contacted my gp and he will be calling me Friday. There is a ms consultant nearby so should I request to see him. Seriously confused so if it looks better why are my symptoms still here and have got worse over the last year. Thanks again Jason.

Sorry for x3 IT issues lol.

Jason I will reply when I am not on my kindle just wanted to say stay strong and smile​​ it confuses people. Speak later.

Don.

Hi Jason I am now out of bed and on my big boys toy (my laptop rather than try and write on my kindle)

I must say sound similar to my dx 20 odd years ago I would get in contact with the consultant by phone they are approachable and alsosee if you can have an MS nurse in your area they are fantastic.

Hope you get confirmation as has been said already the limbo is awful.

Don

Hi Jason, definitely ask for referral to MS consultant. Write down what you want to say to GP as it’s easy to forget. Explain about the O bands & how you are not satisfied with the what the neuro has said. What the neuro has said about signal change is basically no lesion now showing… but your symptoms and positive O bands should have led to dx or at least further investigation. Best of luck… let us know how it goes. Pat xx

I agree with what’s been said already, don’t give in!

Sonia x