Hello.
I am new to this group and from the US but decided to join this forum as the US National MS society doesn’t seem to have a chat forum like this.
I was sent an e-mail by my doctor yesterday stating that the results of my lumbar puncture came back abnormal leading him to think more and more about a possible diagnoses of MS. Although, he cannot diagnose it positively yet due to lack of appropriate diagnostic criteria from my MRI (one without contrast dye/1 with dye that did not stick to any of the lesions in my brian–no spinal lesions to date) scans he does believe I have it.
Next steps look like me either choosing to start a DMT or waiting to do follow up scans in 3 months to see if any new lesions have developed that would allow for a definitive diagnoses. I am very confused and lost as to what is the best option at this fork in the road. I am hesitant to start he DMT as I know the drugs have side effects and since I haven’t been positively diagnosed I feel very unsure.
I haven’t had loss of body function yet, but had difficulty swallowing, severe depression, memory/cognitive troubles, and blurred vision as my main symptoms.
Any thoughts from invidivuals who have been on this journey longer than I are greatly appreciated.
Thanks for all your time+support.
Shawna
Hi Shawna
It is entirely up to you whether you would prefer to wait 3 months before starting a DMT.
My first DMT was Copaxone and then moved to Tecfidera.
To be honest Copaxone was a doddle. Daily subcutaneous injections, very easy with a device which means you never see the needles. The main concern is atrophy, (which I developed). the injections sites must be rotated to avoid this.
Ask what will happen if the drug doesn’t work for you as I have always been told what the next one will be.
(I’ve put the last bit in because I have no idea of the rules in the US.)
I hope that has answered your questions.
Carole x
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Hi
It sounds like you are in a similar position to me - I haven’t been diagnosed with MS, but I have been recommended to go on a DMT called Plegridy. My MRIs are clear - except for optic neuritis, which is what triggered the investigations into MS. It has taken me over a year to get to this point.
My neurologist was highly recommending I start on Plegridy because of evidence of white blood cell activity in my CSF - he said it is a preventative measure. I am planning on following his advice because it is my sight that has been affected so far and I am terrified if it happens again I could lose my sight (I realise this is unlikely, but it really worries me!). I am seeing the MS nurse in person in the first week of January to discuss it, but I don’t see the harm in trying it out. I am terrified of needles and I will have to inject myself, but I figured I will just have to be brave.
I have no idea if that helps at all - I realise it is a personal decision. My neurologist said - I have a pristine spine and brain, we might as well do everything we can to keep it that way. He has been very positive about all of these things throughout my diagnosis (which is officially Clinically Isolated Syndrome) - do you know which drugs you have been offered?
As I understand it MS diagnosis used to be a wait and see if someone has another attack, but since new ways of detecting other things in the spinal fluid, it has become easier to make decisions about DMTs. The sit and wait feels terrifying for me, I have done over a years worth of sitting and waiting and I can’t do it. I know it isn’t a perfect solution, but it helps me to think positively knowing I’ll be doing something to prevent anything else from happening. Although I can see, I might never go on to have another attack, so going on the DMT is a pointless activity that will cause me more stress… I think it really depends on how you feel about using a DMT. Will it cause more stress than it is worth? Or will it bring peace of mind? That’s certainly the questions I’ve been mulling over during this Christmas period!
Sorry for the long post!
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Hi Bettie (sorry to hijack this thread), just wondering, are you in the UK?
I’ve had two positive lumbar punctures (for Oligoclonal bands)- one in 2018 and one in August 2020. My brain MRI from 2018 had ‘non-specific white spots’. I’ve not had an MRI since or a spinal MRI.
I’ve had loads of symptoms since the 2018 MRI. Including an episode of double vision and non-stop burning pins and needles.
The neurologist I saw (before Christmas) has just left it. I’ve no idea what is going on.
I keep seeing people being diagnosed with MS, or at least CIS, with the same type of testing combination as I have (positive LP but inconclusive MRI, yet having symptoms).
I had the positive LP 2 years ago and haven’t been monitored, or anything. And the LP is still positive a year and a half later. Yet I’ve not been given a repeat MRI.
I’m curious, if you don’t mind me asking- what is your neuro doing in terms of monitoring? How has this all been explained to you?
Hi, It all started with losing sight in my left eye, multiple hospital trips later and various sight tests and VEPs, MRI etc and I was referred from opthalmology to neurology. This was October 2019, I was diagnosed with optic neuritis by opthalmology, but my symptoms were slightly atypical - so before the MRI and VEPs confirmed the optic neuritis they did talk of something pressing on my optic nerve… ie a tumour! It was a relief to know it wasn’t that! I saw the neurologist end of February this year for the first time. The original plan was MRI and then LP only if MRI on brain and spine was clear. Then lockdown happened and things got delayed. Had MRI in early June I think, it was just as they were re-opening hospitals up so it could have been a bit earlier than that. MrI came back clear, so on to the lp, eek! That was 5th October (2 days after my 28th birthday, won’t be forgetting that date in a while, rather ironically it is also a year on from my first few hospital appointments which there were about 4 in quick succession, including on my 27th birthday, all the fun!) that came back with evidence of white blood cell activity, but everything else clear. Saw the neurologist late November and he said he recommended Plegridy. I’ll be seeing him once a year as I understand it, but I know there are blood tests that will be more regular than that, but thats to monitor the Plegridy I believe. I’ll be seeing the nurse on 7th January, I don’t know exactly what that will entail, but it is face to face. I have been very lucky with the neurology department near me, they are absolutely fabulous and I have been so looked after. Especially as this was all going on during lockdown, at a time when we all need support and I couldn’t even hug my parents! Is that the sort of thing you wanted to know? Does that help? It sounds like you’ve had a long journey. You mentioned double vision, have your optic nerves been looked at? My first MRI was a head and orbital and the second was head and spine. If yiu haven’t had an orbital, might be worth asking, the only signs I have are on my optic nerves, everything else is fine… Bettie x
I was just wondering how some peopel were breing treated despite a clear MRI and negative LP.
I know there’s a kind of ‘wait and see’ period in some cases. Although I’ve had two positive LPs.
I actually spoke with a nurse from the MS Society, who said that how I’ve been treated make no sense- because 2 positive LPs is a sign of disease activity. And that some people get diagnosed with MS or at least CIS, with less ‘positives’ than I’ve had (in terms of testing).
I wasn’t sure if you were in the US, for example, if things are different there. I’m from the UK.
Oh yes, sorry, you did ask that! I’m UK too. It does sound strange that you’ve had 2 positive lps, but not treatment… I know treatment varies across the country. What is your diagnosis? Or have you not been given one? I really don’t know what I would have done if I had been told there wasn’t anything to be done and no diagnosis. I was diagnosed with CIS as soon as I saw the neurologist. The MRI and lp that I then went on to have were to decide if it was MS or CIS and if I needed a DMT. My neurologist did say, some neurologists wouldn’t prescribe a DMT for someone in my position, but that he would.
Well, to be honest, I kind of had an emotional breakdown! I’ve had huge ups and downs with all of this. I was ‘happy’ to be offered the second LP to see if that got me anywhere, I felt I’d get some kind of answer. And then to be told, well, nothing.
I don’t have any kind of diagnosis, nothing. No plan.
The MS nurse said that a recent positive LP is a sign of ‘dissemination in time’. And she was baffled why I didn’t have any kind of plan in place.
I went through 2 lumbar punctures, it feels like, for nothing! The MS nurse couldn’t understand why the more recent positive LP didn’t prompt another MRI and why they are going off a 2 year old MRI.
It is very weird. I’ve asked about it in other MS groups, and the general reponse was that it doesn’t make sense and doctors have been unclear.
I’m sorry, that sounds awful. I can’t believe that they haven’t even given you a plan. Like yearly MRIs, or something… can you get another opinion? I don’t know how getting a second or third opinion works… it certainly doesn’t sound supportive at all. A plan of regular MRIs would at least give you some certainty and security to know if anything else happens, it will be caught quickly.
Thanks.
I’m either going to ask my GP or go private. I just cannot live with these symptoms any more.
I feel I’ve been messed about and i just want some clarity.
The MS nurse was really helpful and said i should push for another opinion.
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Hi Carole. Thank you for your response. I am still very much in limbo about going on the DMT as my doctor said we are still short of a positive diagnoses and my symptoms have been mostly mild from what I can feel. I am concerned that if I don’t act though that the disease will progress and later I will be regretful for not starting the DMT sooner. Gosh, this is all just so much to take on and without a definitive answer I am very uncertain–especially going on an immunosupporessant during COVID!
I appreciate your reply.
Best,
Shawna
Hi Bettie.
Thanks so much for your reply. As i replied to Carole, I am hesitant to start a DMT during COVID times–being put on an immunosupporessant during COVID seems really crazy. But then again, I worry that if my symtoms progress that I will end up regretting later on not going on the DMT. What a weird time to get this diagnoses. My symptoms have been mostly cognitive other than the vision piece. My neurologist sent an e-mail and said while we are sitll short of a positive case, he does think there is a good chance I have MS. I felt it was very removed of him to send and e-mail on Christmas eve about such a life altering diagnoses. I appreicate the timelyness of his reply, but the way he went about it was just not personal. Thanks for reading my gripe. I am just super lost as to what the best approach is. I am going to be heading home to live with my family in a different part of the country to get a second opinion and hopefully better care.
Happy New Year.
Shawna
Hi, I know, I was worried about being immunosuppressed during covid, but the neurologist said not to worry about it. It obviously depends on age, but I’m in a very low risk group for death from covd. My risk of death is something like 0.5% he did suggest that it might increase my risk of death from by up to 50%, but 50% of 0.5 isn’t much! He also said because covid is such a new illness, there isn’t the evidence to say either way, but that the DMT I was going on was one of the older ones and is pretty much as safe as they come. Can even take it while pregnant, which apparantly is a sign of a really safe drug! I’m sure these are all things you’ll talk about with either an ms nurse or your neurologist. Do you have an appointment lined up? I certainly think a second opinion in another part of the country is a good idea, especially if you feel yiu arent getting the support you want. I don’t think I could have made this decision without such a supportive neurology department! They have kept me informed and seen me face to face pretty much all the way through this! I can’t fault them! Happy new year to you too! I hope you can find some time.to get some rest without thinking about the MS lurking in the shadows! Xxx Bettie
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