It is Definitly not MS

[tyler911]

Hi Everybody

Been a long time since i was on this site, due to my worsening health,
I got myself a new neuro and within weeks he ha definitely taken away my diagnosis of MS, I still unfortunately have the Sarciodosis

what I actually had was cervical spondylotic myelopathy and cervical disk degeneration at C4-5 and C5-6 with progressive Neurological Deficits plus compression fractures from L1 through L5 ( That's why i was in agony)
they are going to cement my back as the surgeon feels like my body cannot take any more major surgery
just got to wait for the swelling and inflammation to go down and the poor old back is not willing to let it go

on the 16th March I had anterior cervical microdiskectomy with decompression of the spinal cord and nerve roots including osteophytecomy and fusion/plating

I am happy to report that 99% of my symptoms have gone, no more walking like i am drunk and no more head swimming in a fish bowl, weakness in upper and lower extremities in fact the only thing i have left from the symptoms is the terrible pain behind my eyes,

I am so happy that is not MS for certain now, and that I have finally gotten almost cured just waiting out the healing process which is painfully slow

The next step in my healing will be having  kyphoplasty on my back to relieve the pain from the spinal fractures, hopefully this will aid the healing, which is not happening right now,

Just thought I would let you all now what has been happening, and that I am on my way to recovery

I also did not know that the above mimicked MS and i am kinda peeved that my old Neuro did not take this into account, especially now going over my notes from all the tests i had done, Cervical spondylitic myelopathy was mentioned several times, yet it was ignored  

I will still pop on and off this site, to see how everyone is doing,
i really hope no one minds me doing this, even though i know now i do not have MS


Tyler

[tyler911]

Thanks so much Lulu for the link

now i would not mind the pat down at airports if it was some nice juicy Swedish hunk lol lol, but all i ever see at airports lol are these women that look like they belong in some correction facility ha ha ha ha

Thanks again for the link

Tyler

[Lulu54]

glad to hear you have found support - MedHelp is trying to grow the sarc site and if you would like to get in on the beginnings, here is the link......

http://www.medhelp.org/forums/Sarcoidosis-Support/show/942

As for the airport security - I love that our  local airport has one of the body scanners. It makes security go so fast - my DH has a wire in his chest from open heart surgery, a couple stents and a big piece of titanium that is now his hip ....  he was always getting the groping pat down in airports.  Now he can get through in about 30 seconds.  What a difference it makes.

As for me, I figure enough strangers have already seen me naked thanks to all me medical problems, what difference do a few more make?  LOL

Do stay in touch and give us updates - it's good for others to hear about the mimics and your dx/tx.
best,
L

[tyler911]

Thanks Lulu and Sarah

Lulu my new neuro said that he is amazed at how many patients are misdiagnosed, though he can also understand the misdiagnosis, so many diseases are now mimicking MS, it is almost scary, He also said that he is not surprised that the true diagnosis was missed, as when the original MRI;s were taken the Myelopathy was not serious, but the prednisone i am taking and the osteoporosis worsened the condition at a very rapid rate,
(yeah i am still on the darned med the neuro said it is going to take a long time to get me off it due to the fact that i went into adrenal insufficiency when they tried to taper me down)

he good news is i am now down from 60mg a day to 15mg and doing well so far,
I am a member of that board you are talking about, and it has been so helpful, the sarcoid is no joke as you say,

i am now having trouble with with my eyes all crusting up with little Chrystal like things, so having to see an eye doc and getting regular check ups, my sight has diminished somewhat, but at least i can still see, so have to be grateful for that,


The infectious diseases doc at the hospital I attend, has said he would like to get me off the prednisone all together then go for a much more aggressive approach, with a round of Chemo, as the sarcoid has brought out sores on my shins that have been there for over a year, so will have to wait and see what he decides when i am off the meds,

Then on top of all this i got a blood clot in my left leg from the groin to the ankle, they started me on blood thinners and they could not get the level right lol, the dosage kept being altered, and then i ended up back in hospital with internal bleeding with a In level of 9
instead of between 1 and 3, but that is now sorted out,  before my surgery they inserted a filter which will stay in for the rest of my life, Ia m now going to dread ever going through the security in airports lol, i am going to set those little bells off big time ha ha


Sparky Sarah, kyphoplasty is where they insert a needle into the vertebrae that are fractured and they put in a bone cement that hardens very quickly, they say that in 90% of patients it relieves the pain almost instantly and also helps the fractured bones to heal

as with most procedures there are risks involved, but to tell you the truth if it means i can live without this awful back brace and the walker, i am more than happy to give it a go,

I am so sick of not being able to get out of bed without hubby having to truss me up like a chicken in the back brace lol, or being able to get dressed or shower by myself, i am actually looking forward to  having some freedom again, and then being able to drive, oh my word, i have not driven in nearly a year, peeps you had all better watch out if you live in Arizona ha ha,

I am really glad that they got to the bottom of what was going on with me, as I was really beginning to think i should eat a bullet things got so bad, I thought just put an end to it all ( I am so glad i did not take that route)

THanks for letting me stay on the board, even though i now know i do not have MS and I will keep you posted when i have the kyphoplasty done all they are waiting for is the inflammation and swelling to go down and then they can proceed,

Tyler

[Lulu54]

Tyler, I did not know that medhelp now has a sarcodoisis support group - that is why my referral got bleeped.  :-)

If you want more information, feel free to PM me.  

best, Lulu

[Sparkysarah]

Hi Tyler

It is always a pleasure to read some good news and I am sooooo happy for you that you do not have MS, as no-one wants this horrible condition. You have had your fair share of horrible neurological symptoms to contend with and sarcoidosis is no joke, but at least you have some clarification and closure about what you have experienced.

I am not sure what kyphoplasty is, but hope that it really helps you with your back pain.
I am glad that you are not going away from the forum completely and we will all be happy to hear of your ongoing progress. I am sure I can speak for everyone that no one will "mind" you coming back as we will all be VERY pleased to hear from you again. Keep well and thanks for update.

Love and hugs

Sarah x

[Lulu54]

Tyler, that is wonderful news.  All we ever hope for is that people get the correct diagnosis, whatever that may be, so the treatment is the right one.

I just read that one in 20 MS diagnosis are wrong .  You are obviously in that 5% group.

You are more than welcome to pop through here and give us an update and check in on us.  WE need all the friends we can get.

Congrats on getting the correct answers - be sure to find yourself a great sarcodoisis support group.  If I haven't already told you, check out the one over at *******.com - they are great.

hugs,
Lulu