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551343 tn?1506830518

I.V. STEROIDS AND STUFF.....

Hi guys havent really been about much as just trying to come to terms with being so ill but having no diagnosis.

Anyway I saw my neurologist on Monday night as I just cant stand the pain and this disease much longer I cant seem to get myself well after 4 years and things seem to be slowly getting worse. The pain is just all consuming now.

Anyway he has offered me I.V. steroids over 3 days.

I got the letter today which was a shock because he normally takes weeks to respond.

I am confused perhaps you could help me.

He says.....:

Just a brief letter about the steroids which we discussed as you know we have suspected inflammatory disease of some type all along although we have never been able to pin it down...


HE then goes on to explain why steroids and the effects they could have on me and stuff.

The the last sentence threw me a bit:

If after thinking it through, you would like to go ahead with it I wonder whether you could let my secretary know and I would then set this up for you through the MS RELAPSE Service at **** Royal hospital.....

Why the MS relapse service, why not just go into out patients and have it done?

It always seems to come back to MS but with no diagnosis.

After all isnt MS an inflammatory disease?

This treatment is for MS he told me so.

Anyway confused again, BUT.....

how many of you on the board have had the I.V. steroids for relapses and did it help ... how long... did you have any bad effects and stuff.

I just dont know what to do or think any more.

I was told even if it worked it would only last for a few weeks....

I really would appreciate your advise.

INFLAMMATORY AND RHUEMATOLOGY.

OK also I have been refused an appointment with the rheumatological department as they say they have read all my notes and it is neurological and it would be a waste of time .....

Well really? If he is saying it is inflammatory couldnt it be something like Lupus which i had positive test? Why am I being refused an appointment.

Should I complain to my PCT?

I just think someone is missing something here which could help me get better.

Oh poo I just dont know what to do anymore.

How hard is it to get well.....

Maria (4 years limbo land).
10 Responses
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1453990 tn?1329231426
I did the 3 day 1Gm IV Methylprednisolone at home.  I felt great for 10-14 days afterwards and went back to the same old sh^t after that.  Not sure if it helped the ON or not, but it helped me out over all.  I wish my current nuero would try it for the Trigeminal Neuralgia I'm having right now.  I did make sure I increased my calcium citrate and D3 when I was getting the IV and oral steroids.

Good luck,

Bob
Helpful - 0
505094 tn?1240317431
Hi Maria.  I've been away from the forum for some time as I needed time to get used to new meds and get rid of some of the old ones.  Rough going, but I survived.  I've read a bit about the 3 day IV steroids and find that it really does help some people and not others.  It sounds very confusing to me.  I also think that a trip to the Rheumatologist first is a good idea and how about a call to your neuro?  Ask him if he thinks you do have MS.  Tell him your concerns.  See what he says.

I know what a huge struggle it has been for all of us to get a diagnosis.  It took 5 years for a neurologist to give me one and even then after a few months he took back his diagnosis.  He actually screamed at me that I didn't have MS...and I thought he was a keeper..silly me.

I am on my 4th neurologist and have been seeing her for 3 months now.  She went over all my previous reports and mri's.  When she looked at my mri she said that she couldn't understand what the problem was with the other neuros as there was no question in her mind that I had MS lesions.

I don't know where I got the strength from to keep trying to find a decent neuro.  I know first hand how desperately frustrating an painful it is to not get help and I really feel for you.

My new neuro put me on LDN (low dose naltrexone) and I've been on it for about 3 weeks.  It is making a huge difference in my energy level and some of my other ms symptoms.  I've been reading that it is also being used for people with several other inflammatory diseases such as Fibromyalgia, Polymyalgia Rheumatica, arthritis etc. -all which I have.

If you go to a Rheumatologist and have other inflammatory conditions perhaps you can get LDN or something else that will help your symptoms.  The best site I've found for LDN is
http://www.lowdosenaltrexone.org/  

There just has to be an answer out there for you.  Please don't give up!  

Even though I haven't been able to be part of this group for a while I think of all of you and how much you have helped me over the years to get to where I am right now.  Hugs to you, you are always in my prayers, Charley.

Helpful - 0
551343 tn?1506830518
hi guys well still here lol and still thinking. I have put in motion a complaint to our local primary care trust (in UK you have to go through them) about the refusal to be seen by a rheumatologist. Before I make a decision I am going to see if I can get something sorted out to see a rumey before I have IV steroids.

IT does worry me that my neurologist is offering me a very potent drug without a diagnosis. At my age steroids are not to be taken lightly because of the bone problems they can cause.

I am now beset with a new pain in my face and ear. I thought it was tooth but not so sure as I only have one tooth in the area of the jaw which starts to hurt. Its worse after chewing something and I am struggling to eat now. In the last few months though I have been having jaw spasms which makes 2 teeth knock together and I wonder if that is something to do with it.

God will it never end.

Anyway I am waiting for a phone call from the PCT people to see where I go from here with rumey.

I also have actually taken the courage and booked a holiday which is for Sunday for a week so things can wait until after then. I am only going about an hour away to the seaside I just think maybe a break away might help me make my decision and will give me and hubby time together.

I cant thank you so much for your support guys.

WONKO you talk sense I do wonder about all this stuff.

Will let you know what comes next.

Big hugs Mariaxxxxxxxxxx
Helpful - 0
1336491 tn?1340619541
Hi Maria

i am a limbolander for 9 months now, i usually spend most my time on the ms site.

i had the 3 x day Myth/predisolone IV steroids some months ago.. i was put on a ward with all ms patients.  i have a numb very painful left arm above all other symptoms, but the steroids did nothing for me.. except, i was getting quite confused a bit of brain fog, lethargic, fatigue etc  the steroids did help with this but not my arm.. or pins needles in fingers.

my after effects were a sore torso like i had been sunburned sore to the touch, i was quite weak and had lots of pain in my ribs like trapped wind.  but this all went after a few days . i would recommend rest after the course if you do have it, nobody told me or advised me on what to do after.  but now i know.. the steroids will help people whos muscles are stiff, and so if you dont have this problem your already weak muscles may become more weaker which is what happened to me.. i hung out washing after my last steroid IV when i got home, and the next day i could hardly move.

but this is not to say everyone reacts the same we dont - personally i would advise you to go ahead with the steroids

take care jan xxxxx

Helpful - 0
428506 tn?1296557399
I agree with binx67 that if you don't have a clear diagnosis, you should be wary of the risks of throwing steroids at the problem.  Steroids knock down your immune system, so if you are suffering an autoimmune attack it can be helpful in ending the flare.  But there are other origins to inflammatory disease, including chronic infections that are poorly understood/difficult to diagnose, for which steroid treatment is contradictory.

I never took IV steroids but was on oral steroids while undiagnosed.  I experience a short-term improvement to almost 99% recovery (after 1.5 years of h-e-l-l) followed by a sudden and painful crash that left me worse than I was prior to the treatment.  

My GP told me that my reaction to steroids would help to diagnose my condition, but my neurologist and rheumatologist dismissed that line of thinking, saying that just about anyone will feel better on steroids so it is not helpful in narrowing down a dx.  

Whatever you do be mindful of the risks versus the benefits.  I hope you find relief/answers.
Helpful - 0
1168938 tn?1327154232
Hello
I'm sorry to hear your plight, I don't know anything about this treatment I just wanted to say hang in there.
As for neuro and rheumatology, I see both so I can't understand why they won't see you, even to prove or disprove that rheumatologist can or cannot help, geez, sometimes it's like banging your head against a brick wall.
I too have been in limbo for 4 years, it's hard trying to keep going with a positive attitude every day, all I can say is tomorrow is another day :o)
All the best
Suz
Helpful - 0
Avatar universal
Hello Maria,

I am sorry that you are going through this. If you are in a lot of pain and you still have no answers, then it may be worth a try to go with the steroid treatment. At this point, you have been through quite a bit and I can only hope that you are given some form of relief.

Thinking of you always,
Ginak
Helpful - 0
Avatar universal
hi maria,

i am so sorry you are experiencing so much pain these days, but it is good to hear from you again.  it is also nice to know that your neuro is doing *something*, *anything* to get you some relief.

please take the following for the grain of salt that it is worth.

i did undergo a 3-day IV solu-medrol infusion in february of this year.  i will be honest with you, it didn't do anything to help me.  in fact, i was bedridden and felt like i was on my death bed for close to 10 days afterwards and my symptoms were completely exacerbated for about 2 months which was incredibly unpleasant.

with this said, allow me to clarify that it is still rather unclear what it is that is plaguing me, and it has been speculated that i may even be dealing with some post-infectious process, so the truly negative effects of the steroids that i had would not likely present in your case.  from what i understand, IV steroids are used for a variety of inflammatory processes ranging from MS symptoms to other autoimmune disorders like sjögren's, lupus, rheumatoid arthritis, etc.   since your neuro feels that you are dealing with an inflammatory disorder, it is likely that you will derive some relief from the treatment.

the other side effects that i believe most people experience relate to insomnia, moodiness, stomach upset and overall jittery feelings which last for a number of days.  they are a bummer, but i think for many people, the trade off can be worth the symptom relief.

again, i don't want to scare you away from having this treatment, but i felt like i needed to give you an honest depiction of my own personal experience which is just that--my own experience.  from communicating with others on the MS board, what happened to me is atypical.

it does sound like your neuro is being proactive with you which has got to be a relief to some degree.  like i said, i am happy to hear from you again, and hope you will keep us posted as things unfold in the near future for you.

best wishes to you,
binx
Helpful - 0
1281603 tn?1283798699
I know that IV steroids are not benign, but having all-consuming pain is not without side effects either. If the steroids have a dramatic effect, wouldn't that prove it is inflammatory and therefore help a tiny bit in your diagnostic direction? Tough decisions.
Helpful - 0
956292 tn?1334054869
Oh Maria,


SO close.....I have to say I have never been on steroids...It sounds like they re saying MS but not diagnosing...Did you have any other tests that would give a definite Lupus Dx.?

If you think they would help you and the pain will you try it? have they ever found lesions with you???I wish i had an answer but maybe you SHOULD talk to your PCT

JibJen
Helpful - 0
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