ms treatment before diagnosed

Hello,

I heard for the benefits of early treatment so to say, so i want to start one of the common medications e.g. tysbari, inferon beta, etc like now while neurologist debate over my condition and wait for bigger flare up and another mri. i read a lot n im ok with side effects, have access to the medications without prescription. the only thing that stops me from my 1st dose if its gonna have negative effect they reject the diagnose?

I realise how inadequate this sounds but in simply terrified.

thanks

hi boborox

you won’t have access to DMDs until you have a diagnosis.

however you can start on supplements, Vitamin B complex, Vit D3 with calcium and magnesium, omega 3 oil.

try to avoid stressing out because to me that signals worse symptoms.

good luck

carole x

Hi CatwomanCarol, I have difficulty swallowing most Vit sups as they are so large. Obviously the Omega oil is OK, but the Vit B is difficult, has anyone found any in liquid form or in tiny tabs?

Magnesium is even more tricky, I have a spray that I use on my skin and it says you can spray it in your mouth too, not sure if it is as effective as taking a tablet but I had a very scary choking experience on a magnesium tab once so this is the only way I can take it.

Thanks both of you.

I have already started on the vitamins and omega oil but I do have access to interferon beta, tysabri and copaxone and can start immediately. My main concern is if the diagnoses is rejected if its going to have bad effect on my body apart from the side effects.

Appreciate your replies.

We’re in the same boat, boborox. I fully expected to have a dx last week, but now I have to wait weeks for Lumbar Puncture and even then probably wait until they see how I recover from this. I understand that it is important to get the right treatment and that it is hard to diagnose etc but like you I was thinking that I would just want treatment to start, even if it is not the right thing.

For me the worst thing about not having a dx is that I am so ill with this cervical transverse myelitis but GP doesn’t really know much about it, and anyway I have to wait a week for an appt with her, yet because I don’t have a dx I can’t refer to the ms nurse. Every day my symptoms develop and I am getting weaker and I am sure I would benefit from physio, but no diagnosis so no access to services.

I’m just going to have to learn to go with the flow and trust the experts, not something that comes naturally to me.

Dear Teal,

I totally got how you feel. waiting to get worse makes me feel helpless :frowning: I don’t get the point of lumbar, the pain and the stress around it and not going to go myself. Yet I have to do more MRI-s and since they are not emergency need to wait for ages; hence i decided to take the matter in my hands. If you decide you are not scared to self administer something, message me I can send you few packs for free.

Keep in touch and stay strong.

Boborox. I’m curious to know how you have “access” to these High Tec drugs. Do you work for the NHS in some capacity? Offering drugs to someone online, without any case history or medical knowledge is not only foolish and dangerous, but illegal. But you must know this…

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Hi Poppy.

No i don’t work for NHS but after frantic search found how to get them- or at least few packs till i can get them officially. I have not offered to sell them but i can imagine the frantic panic when you don’t know anything, you wait, you Google every new symptom and still don’t get any medical help on time- basically the thing which made me find those for my personal use. Unfortunately, you are right that someone can take advantage of this although i didn’t have any bad intentions and just want to help while the endless wait (especially after i refused lumbar).

It is not just accessing them it is knowing how to administer and monitor them. This is a fool hardy suggestion in the extreme and I hope no- one tries this. I say this as a newly diagnosed person actively pushing for the most aggressive treatment I can get my hands on as soon as possible.

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Users of this forum need to be aware that with regards to treatment or medication, we recommend that in all circumstances, one seeks the advice of a health professional.

Best wishes

Stewart (admin)

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I am amazed this thread hasn’t been removed.

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Don’t worry everyone, I won’t do anything that isn’t recommended by my GP or neurologist.

Had a bit of a ‘do’ this morning, just waiting for GP visit and expect to be admitted later, so if you don’t hear from me for a while it isn’t because I’ve gone ‘rogue’, I’m still very much part of the system, which, while it feels slow, is much faster than me trying to qualify as a neurologist and treat myself.

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Forget that. Apparently they’ll only admit for incontinence or breathing difficulties. So I’m still here.

Boborox, for someone who doesn’t fancy the thought of a lumbar puncture, you show a remarkably devil-may-care approach to the prospect of injecting yourself with heavy-duty drugs from a (necessarily) illegitimate source. Even if the drugs are what the people selling them to you say they are, rather than (as seems to me equally likely) a thrifty mixture of talcum powder and Vim, this would be unwise to put it mildly.

Please, please don’t even think about it. You are not well, you might have MS, you have enough problems.

I know it’s tough, but the legitimate formal route is the only way for these things.

Alison

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My husband is a pharmacist and I would not advocate the use of any drugs from anyone not medically qualified. Heavy duty drugs like interferon could have side effect that would affect you later on. It seems your diagnose is is unclear and yet you’ll risk taking something that’s not recommended by a specialist form a non NHS source it seems (can you be sure of the ingredients?). Please think carefully about your decision.

I was diagnosed last week after years of mobility issues and I am not chomping at the bit for anything, because I want to be sure of what I am doing. There is no quick fix here from what I can gather.

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I’m more concerned that the poster is happy to assist, actually offer to supply someone else! I mean seriously.lying drugs through this Forum!!! Why hasn’t this thread been removed?!

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I’m actually very angry about this. The forum is supposed to offer help and support to people, not to peddle drugs. Ecstasy anyone? Just off now to have a spliff.

[quote=“Teal”]

Forget that. Apparently they’ll only admit for incontinence or breathing difficulties. So I’m still here.

[/quote] Admit for incontinence? Bloody Hell if that related to me I would be in hospital permanently!:relaxed: Hope you are feeling a bit better now.

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Thanks every1 for contributing here.

I thought its place to share rather than attack each other with bitter comments for some not so “rational” personal choices. My question was about the potential harm to my immune system if i don’t get diagnosed not about side effects and how it is regulated by NHS (am very well aware of that) The “source” of the meds is as safe as the one you get them from, so i have no doubts about them being legit and dismiss this otherwise valid point as i said from the start.

I may disagree that its ok to wait till you get so bad that they have no way not to check you but then again its subjective how we interpret the situation and no one can be at others’ shoes especially when it comes to ms. Yet definitely there s a point that medication should suit the symptoms and if you have side effects at least to know the bigger issues are gone. BTW great link, thanks.

Nevermind, managed to get appointments with proper ms specialists …so at least something s happening to keep my mind in peace which ironically turns the most difficult thing to cope with.

All the best

Sandra

Hi Sandra

I have been reading your posts with a lot of interest and, to be honest, I think you have been getting a bit of undeserved stick on here.

I agree that too often we are needlesly kept hanging on in limbo whilst we are processed through the medical sausage machine. Everybody reads that medical opinion is to hit MS “hard and fast” the norm just seems to be delay and hedging bets by neurologists. Why is this?

I know that in the US there is a significant black market in medicines being brought in from Canada where prices are much cheaper. Is this the kind of thing you are suggesting?