Starting steroids for mystery disease

[jumpinjiminy]

The trial dosepacks worked well to eliminate the neuro symptoms and knock out the fever. Since it had such a great effect, I decided to skip the spinal tap and Mayo consult and go ahead with this treatment for now.

I've been tested for everything under the sun it seems for the last four months. I'm tired of it all. Running to this doc and that one, waiting for someone to help me get rid of this horrible everything.

Since the only thing showing up are thyroid antibodies and they can cause the symptoms I've been having, my doc offered to go ahead with the steroids so I can start feeling better.

We're starting with a high dose and tapering down over the course of the month. Something tells me it's going to take longer than a month. We will cross that bridge when we come to it.

Now I'm starting to feel like I don't really belong here. I do not have MS. It acts a lot like MS (only evolves and spreads much more quickly) but leaves less long-term damage if treated right away.

I don't really fit in anywhere on the med boards. This is not a common thing to have. Not many can relate to the experience.

[summerluvr]

It was there loud and clear, it just took two years for a doctor to notice it!

I don't take imunosurpressants, I took high dose steroids for that (dexamethesone).  There are new chemos out for MM now, the one I did four cycles of was Velcade.  Then I had other older chemos for my stem cell, cyclophosphomide and melphalan.

Now I am in remission!  But may go on maitenence oral chemo pills.

Did your doctor tell you that steroids cause insomnia?  They do!  My doctor prescribes ativan to counter this.  She told me she has 70 year old ladies cleaning their house at 4am 'cause they can't sleep. LOL.

[jumpinjiminy]

Ah. Multiple myeloma. Makes sense now. Amazing it took two years to show up. Do they treat that with immunosuppressants too? My husband had to go through treatment a couple of times for AI with plasmapheresis, prednisone and cytoxan. My GP said he was treating someone with MM the same way. But you've had a stem cell treatment?

Starting to feel the effects of this prednisone. Either that or I overdid it yesterday. I haven't been sleeping well and have needed xanax to knock off. I'm awake but tired. Not quite to Zombieville yet though, thankfully.

[summerluvr]

For my case, I kept getting sicker, ended up in the ER, ER doc ran blood work and some stuff was way off (protein level and hemoglobin)  so he referred me to the  internal medicine group in the hospital.  They had me do some more blood work, and were 95% sure I had Multiple Myeloma, and confirmed it with bone marrow biopsy. I had nerve symptoms because I had something called hyperviscocity syndrome (thick blood) because I had so much cancer cells in my blood.

[Willowwoman777]

I am so glad you are being helped! When I was dx'd with lupus, the rheumie told me that if I had Graves desease, that would explain most of the symptoms, because there are so many symptoms that cross over with lupus, ms, etc from graves. I was floored, but as it turned out, I don't have graves - just lupus and MS. As far as you staying on the MS forum? Well, you know what they say? Variety is the spice of life :)

[jumpinjiminy]

LOL. Maybe I'll try it just to get a look at the goons. :-P

[Quixotic1]

We have had a list of Mob Family Rules since the inception of this board.  The first rule is that no one leaves, especially no after we have bonded with you.  It would be like taking away someone's puppy!  For a long time I would knit body stockings and force people into them, so that they would stick to us like Velcro.  However, I got too much guff for knitting in a third arm or misplacing the boobs or something and the people rebelled.

Remeber, also, we have a secret Greek society, and if you try to leave, we have to kill you.  It's called Hypo Gamma Chondria for all those who have been told they are crazy, think they are crazy or might become crazy sooner than later.  And for those who are UNdiagnosed, MisDiagnosed, or Diagnosed and P!ssed off.  

So if you leave you'll force us to send someone to hunt you down and drag you back by your hair.

'Nuff said?

Quix

[jumpinjiminy]

How was it the blood cancer caused neuro symptoms? Did you end up getting your diagnosis from a research hospital?

I guess I'm not the only non-Mser here then. Technically still in limbo though.

[summerluvr]

I agree with what wiggles said.  As most are aware I don't have MS, I have a rare blood cancer, but I presented with many nuero symptoms so my doctor originally thought MS. Though it took over two years, and at least a dozen doctors (likely more I've lost count) to diagnose me. So I mos def know the limbo struggle.  My cancer is pretty rare, and my at age is extemely rare, so there isn't really a forum like this, I keep posting here because I know the MS'rs understand what living with an uncurable chronic disease is like.  My cancer is non-curable, but treatment can produce remission, and hope fully longer term remission, but My doc has told me 5 years remission from my stem cell would be a blessing.

[jumpinjiminy]

Addendum: I've been helped so much by everyone here from the beginning of this thing, and appreciate all of the input and advice given so freely. This is a wonderful community of supportive, caring people. Thank you all for helping me along in my journey.

[jumpinjiminy]

Thank you so much for the warm responses. This has a lot in common with MS as far as symptomology, but is more controllable. I can say that this has given me a new appreciation for what people with MS go through on a day to day basis.

I would love to stick around. If there is any way I can use this experience to help someone else, it's worth it being the odd one out.

[wiggles94]

I agree with the others.  You should stay here.  I think there are many here who are in limboland, or dx but not even sure they have MS - and sometimes DX are taken away .....so who ever knows for sure what's going on?

I think that anytime someone can share what they are going through - others can learn from it.  Whether it's in relation to medical issues, or emotional ones.   So by staying here and sharing , you are hopefully helping yourself as you are helping others.

You said that you don't feel like you belong here, and what you have is rare, and others won't be able to relate.  BUT I think that when someone has a chronic illness, even if it's different from someone else's illness, there are many things in common.  Issues with docs/medical, feeling scared, alone, depressed etc etc etc - You get what I mean.  

So if you like being here - stay.

[figuerpa]

I agree 110% with Ren, once you are a member you stay a member.

I am glad the steroids are working for you and hopefully they will find out what is going on. Eventually they will so don't give up hope just keep on fighting for answers. Someone will figure out that right test that will determine what is going on with your body.


Think positive and I will send many positive thoughts your way :)

Please don't go, stay around and like ren said vent and share your experiences becuase they are more than welcome here :-)

Paula

[rendean]

It does matter if you have MS or not, you are always welcome to stay here on our boards and join in conversations or just lurk. We have some members summerlver who do not have MS and is still a member and answers posts.

So, once a member always a member. Besides, it seems like you need a place to vent and talk so jump in.

I'm glad the steroids seem to be working for you. Feel free to come here and share your experiences. Since you had neuro symptoms perhaps your experiences could help someone else in limbo reach an answer.

Ren