Hello, I need advice please, I’ve recently been diagnosed with ms after my legs started tingling and subsequently seeing a neuro. It started 4 weeks ago with tingling in both feet, starting from the toes and over about 2 hours it moved up to my hip line. I left it for 3 days but couldn’t take it anymore. The symptoms were startling so I committed myself to casualty at the nearest hospital with a good neuro. After seeing the neuro and having an MRI etc done he told me I have ms. We agreed that I would come in for a cortisteroid drip for 5 days. I did that but with a week delay due to the neuro being unavailable. During the week preceeding treatment while waiting for the neuro the symptoms completely disappeared however I still went for the treatment since I was quite convinced of the diagnosis looking at the lesions on the MRI. A Lumbar puncture was performed on the first day of the treatment and I was informed about the CSF: finding - oligoclonal bands are noted in the CSF only (absent in serum), indicative of intrathecal immunoglobulin synthesis. Disclosure, I was previously diagnosed 4 years ago with cubical tunnel, it was a similar experience but in my arms. The odd thing was that it started tingling the same way as my legs, both hands started tingling at the same time, gradually increasing over 2 days until both forearms were tingling. That subsided after a much longer period (6months) however the right arm felt normal much before the left. The left maintained some residual for about 2 years (feeling of tight skin on my hand but that too disappeared). Now: This is the question: do my symptoms sound strange to anyone else and more importantly the issue I’m dealing with as I write this: When I was discharged from hospital this last Friday (5 days ago) the neuro prescribed oral Pulmison 20mg which I understand to be a anti inflammatory steroid. The problem is that as soon as I take it (took me a few days to realize cos I’ve been so drugged) is that it instantly brings back the burning, tingling sensation in my arms, worse than they were 4 years ago, need to drop my arms in ice for it to feel better and I get severe vertigo about 10 minutes after taking them both symptoms lasts for the next 12 hours slowly subsiding but not disappearing completely until I bump it up again with another tablet. I’m seriously considering quitting this med, I’ve unfortunately just missed the neuro’s office hours on the phone and I’m reaching out to others who know what I’m talking about. Please give me your thoughs, whether about the meds, the diagnosis or the really strange side effects I’m experiencing.
Apologies, title says prednisone, I meant pulmison.
Sorry to answer your questions with questions, but your diagnosis sounds a little unorthodox. It’s unusual, though not impossible, to be diagnosed following a visit to A&E, and typically takes much longer - even if MRI & LP results support an MS diagnosis. They usually wait to be sure it cannot have been a one-off attack. So have you received a confirmed diagnosis in writing (the kind you could go to an insurer with, for example), or have you just “been told”?
I’ve checked, and you’re quite correct that Pulmison is a steroid. I don’t think I’ve ever heard of anyone saying oral steroids actually made their symptoms worse, although they can have some pretty nasty side-effects in their own right. I’m wondering if you could be allergic to them, or something. Does the patient information leaflet mention anything about these possible side-effects? I’m a diagnosed person, but have so far resisted steroids, so no kind of an expert.
I wouldn’t have thought such an instant, and indeed repeatable reaction could possibly be the MS itself. Also MS symptoms don’t generally last for ten minutes, or even 12 hours. They’re either more-or-less permanent, in the case of residual damage, or have to persist for 24 hours or more, in the case of an official relapse. 10 minutes to 12 hours doesn’t fit either of these.
I think you need to speak to your doctor or pharmacist ASAP about whether to persevere with these pills. Assuming you do have MS, there is NO adverse outcome associated with not taking steroids for an “attack” - you just won’t get better so quickly. However, I do not know whether it’s OK to stop suddenly, once you’ve started - you will need advice on whether you can just bin them, or whether you need to wean, or complete the course.
Hello and welcome
If I were you, I would stop taking them. I’m not a medic though, so I think you should give NHS Direct a call and ask them - they will check with a medic and get back to you.
I am annoyed that the neuro let you go ahead with the IV steroids despite the fact your symptoms had gone into remission. I can’t see any reason at all that they were necessary: steroids are used to shorten the duration of attacks and yours appears to have already stopped! Did he/she even ask you? (It’s not like you would have known to tell him/her and he/she should have realised this!)
As far as the two attacks go (the hands/forearms and legs), they sound very MSey to me because MS attacks often start in one place and then spread, so not strange (to us!) at all. My first significant attack started with tingling and hypersensitivity below my knees that spread upwards over the course of a week, stopping at the level of my breastbone. So, very similar to yours.
Not sure if you were asking, but your LP result is the one that supports a diagnosis of MS: oligoclonal bands are a sign of immune system activity and having them in the CSF but not the serum (which is taken from your blood sample) means that your immune system has been active in your central nervous system, but not in the rest of your body.
Tina thank you, I think I should rewind a little and calm down, Your question is very valid. I have not yet had the official letter so ill accept your view, the diagnosis is not yet final, I was told by the neuro that they are quite confident with their assessment, based on the symptoms and number of lesions, there are quite a few, according to 3 three neuros who viewed the MRI scans, (one my neuro) two at a nearby medical university the assessment seems very likely but I myself obviously have still have doubts about the underlying cause of the scars (might never know the answer). I’m doing my due diligence however in terms of lifestyle and eating habits since I’ve accepted this as part my life. The reason for the cortisone treatment I’ve received is apparently since I must commit to treatment 3 times before being given access to copaxone and the like. I will speak to the neuro tomorrow morning about the pulmison but I must admit I find it incredibly strange that my nerves are burning like this from the steroid, arms burning like fire and irratic spikes of tingling running down my spine. I cannot find similar side effects online, unfortunately the pill box did not contain the note, I think the pharmacy repackaged it into their own box and didn’t include the note. I have 1 day’s dose left but will confirm with the neuro. Thank you again, I simply feel like no one apart from Ms fighters will understand this rollercoaster.
Thanks Karen, absolutely, in the last 5 days I came to the same realization after researching obsessively, I too believe this is an oversight which should not have happened, I honestly didn’t know to question it at the time since I assumed that this was the standard procedure. I believe I need to go to another neuro and discuss my situation at length and in detail. I was beginning to feel comfortable with the previous assessment, almost glad that I knew but now I’m hitting a new phase, confusion about symptoms and meds which should help, not hurt.
Hi again, Are you in the UK? The reason I ask is I have NEVER heard of access to Copaxone etc. being made conditional on accepting three cycles of steroid treatment! This is absolutely unethical, in my opinion, as the two classes of drugs are really quite unrelated, and don’t have the same objectives. Acceptance (or not!) of steroids should have no bearing whatsoever on your eligibility for DMDs. I sincerely hope your impression is down to some kind of misunderstanding, and you’re not being held to ransom in this way. I’ve never had steroids at all, but it did not affect my eligibility for DMDs (which I declined too, by the way, although it’s not material to this story). Have you spoken to your GP, or to anyone, about whether this condition is correct, and what are the reasons for it? The only reason I can think of (and it’s not one I’ve heard of, officially) is if they’re unsure whether you have relapsing remitting MS (RRMS), or primary progressive (PPMS). Response to steroids might be a way of further assessing this (in general, PPMS does NOT respond to steroids). But it all seems highly questionable to me, and not a usual condition for Copaxone and the like. Tina
Hi Tina, I’m in neither US or UK, I’m in South Africa, the reason for the 3 treatments within 2 years for MS is unfortunately beaurocracy in the medical insurance industry here so since the neurologist has certain surety about the assessment he told me the sooner we get it done the better, I don’t think there are many alternatives for me unfortunately so I will not blame the neuro since I’m sure he merely doing his due diligence to get me the correct meds as soon as possible. He’s view is the sooner we get to ideal meds, the better and I concur, he is a very highly rated neuro for MS (I’m 30yo right now and my lesions are not in areas which normally affect muscle or optics) My concerns are much more around why the pulmison is having such a strange effect even though the drip did not.
Thanks for explaining you’re not in the UK. Please be aware that although members from anywhere are welcome, and we do have a few from all over the world, this is predominantly a UK site, so unless you specify otherwise, most people’s answers will reflect the situation as it is in the UK - which may not be the same where you are. That would probably explain why your route to diagnosis did not sound typical (for the UK, that is), and also why you have strange conditions we do not have here, about needing three lots of steroids before you qualify for Copaxone or any of the others.
If they are your passport to DMDs, it certainly explains why your neuro would be keen to get you on them, in circumstances where it wouldn’t necessarily be seen as desirable or advisable in this country. Here, there tends to be quite a conservative attitude to steroids, and somebody would certainly not be encouraged to have three lots in two years, unless they had very debilitating relapses, that made it unavoidable. But if it were the only route to access DMDs, I’m sure that would be different.
I still think it’s a very poor system, though, that forces you to undergo three cycles of drugs you possibly don’t want or need, before you can access those you DO want or need.
In the UK, although the rules are not written by insurers, there are still criteria about how frequently and severely you need to have relapsed, before you are eligible for DMDs, but it makes absolutely no difference whether you took steroids - or were even offered them.
That is the stupidest policy I have ever heard of! Obviously there isn’t a whole lot you can do about it, but I am very frustrated on your behalf!
At best, steroids shorten a relapse. That’s it. They don’t always work, they don’t change the outcome and they are strong drugs with potentially bad side effects. Some lazy person has obviously decided to measure how severe someone’s relapses are by whether or not they had steroids without considering that this would result in people having these drugs when there is absolutely no need for them. In my opinion, that is criminal.
When you add in the fact that having had steroids increases the chance of developing PML should the person go on to have Tysabri, I think there may be a strong and massive compensation case if not a criminal case should some unfortunate person become seriously ill or even die as a result.
I’m amazed that neuros don’t just lie.
Tina thanks, I decided to register on the UK site since the experience of the members is in many ways more mature/informed, i think we all become a bit OCD after doctors start talking about MS trying to understand as much as possible. Since the society has a long standing history I don’t think I can go wrong by contributing to the forums or at least pay attention to what people are discussing. Concerning the treatment i have available right now, Yes unfortunately myself and my doctor must deal with the system but its part and parcel. I will certainly speak to my doc asap and attempt to figure out why the pulmisol would have such strange effects, vertigo being listed (i knew that could happen) but not the nerve sensation, that is definitely a weird one since its the opposite of what supposed to happen. I will provide feedback here as soon as i have some since some other individual may very well experience a similar situation at some point I think I should contribute if I can, it really does not seem normal.
Rizzo, yes I can totally understand why you feel so strongly about it. I can’t say that the overall experience and also reading about the stuff others go through on the road to diagnosis has left me warm and fuzzy inside but I’m not particularly negative, more interested in what people have to say about my symptoms