I do have a demyelinating disease after all

Hi All,

 

I thought I’d write an update on my “status.” Several months ago I posted that I was taken off Copaxone because my neuro no longer thought I had ms. Anyway, he did refer me to an ms center, and I had my appointment with the specialist yesterday.

 

The ms neuro said that I do have a demyelinating disease, and he pretty sure it is ms. He confirmed that a lot of my history and abnormal clinical signs are consistent with the location of the lesion in my brain. However, he also feels that there is at least one other lesion on my spine causing other problems. He ordered additional tests, and at the next visit we will discuss diagnosis and treatment. Unfortunately, his next available appointment isn’t until February 2008, but it is worth the wait. In the meantime, I am supposed to call the ms nurse if I have any problems, need the ‘roids, etc.  

 

Sunny

I'm sorry your diagnosis is confirmed...but it is too bad that you have to wait that long to get back on one of the drugs. Hang in there, and do keep him informed if you have any further symptoms, or worsening of existing stuff!

Thank you so much for the support! While the long wait for an appt is a drag, I am incredibly grateful to have a neuro who is so knowledgeable and kind.

 

Yes, limbo is quite rough, huh. This second time in limbo I have really struggled both physically and psychologically. Having my “answer” and treatment abruptly (and not too nicely) revoked was a really jarring experience…it also happened in the middle of what the ms specialist seems to think was a flare. I am not able to work or drive right now, which has also made this limbo a lot harder to ignore than the first time around.

 

The return to limbo was also very hard to explain to friends and family. I felt like I had somehow deceived them by (previously) telling them I had ms, and I was also just pretty sick of talking about the situation. I lost touch with a lot of people during the past couple of months, because I didn’t know what to say to them. Has anyone else felt this way? Now that I have some answers, I know I need to tell my family. Even though I am not diagnosed and of course I don’t want to have ms, I feel a sense of relief simply knowing what is going on with my body.

 

Sorry for the long ramble. It really does help to be able to share this with people who understand…this stuff is just hard for me to write about in a clear manner (oops I am still rambling..lol).

 

Sunny

Hey Friend

I"m so glad to hear from u!! I agree with Shar...u didn't ramble at all...i was glad to hear it all. U've really been thru it lately and we all know u've struggled. We're here for u...i'm here for u. U mean so much to us all here and we want to see u get the proper care and treatment u need and deserve. I"m so happy u'r new doc is doing that!

I know how u must've felt...as if u'd misled u'r family, but u can only go by what u'r docs tell u for the most part...and in the end it's all about what u'r experiencing and not the label u'r given. U'r symptoms didn't go away when the doc revoked u'r dx....u were still hurting and that wasn't at all deminished. Don't let how that doc made u feel become what u think of u'rself or how u feel u'r family and friends saw u. That was a quack doc and he's proven it in the way he acted with u. Now, u are back on a good path...moving towards a dx....and u can focus on making Sunny better inside. Do that. Lean on us here and elsewhere and don't let anything or anyone keep u down friend.

Sunny, You are too hard on yourself. You are not rambling in your posts. They are clear and well written. Gretchen, on the other hand, is a whole different story. Just Kidding! Oops, I think I have been grading too many papers! LOL

Sunny

I"m so sorry about the lung infection!! My goodness!! U must be so sick! I'm so glad u saw the doc. Take good care friend and please do let us know how u are. As for the battle with the small furry animals...all i can say is....

HAHAHAHAHAHAHAHAHAHAHAAHAHA.....aaaahhhhhh.......AAAAHHHHHHHAAAAAAAAHHHHHHH........hehehehehehehehehe!!!!!! Go get 'em!!

I finally slept through a lot of the night last night, so the antibiotics seem to be working. I had no idea I was that sick either, lol. I haven’t gotten sick in almost 5 years, and this certainly isn’t a normal case of the “cooties.” The problems with my leg/feet seem to be holding pretty steady, and I am especially relieved that the weakness doesn’t appear to be getting worse.

 

Rhonda and Gretchen, I’m glad you appreciate the seriousness of the squirrel situation here. You have seen pics of the tremendous cute factor these thieves posses. That cuteness is unfortunately more powerful than the “weapons of mass squirrel destruction” (good one G!) I have to admit that their antics really do brighten my day…but if they go after my flower bulbs, it is war!

 

Sunny

My husband actually plants a "critter garden"....corn, beans, squash, tomatoes, and it is entirely for the critters...squirrels, deer, woodchuck, rabbits, whatever gets in there.    He just plants the garden, fences it off until it starts to come up, then takes down the fence and leaves it for the critters. And then there is the fox who comes to get the squirrels, and the raccoons who come and clean up after everyone else...  and an occasional (very occasional, thankfully! bear)...

We had tried a "people garden" for a couple of years...and it took SO much effort to keep the critters out, we gave up, went this route, and I buy my fresh veggies from the farmers across the road who have a HUGE "truck farm" and sell veggies from their barn..  :)

Hello. I have demyelinating disease. My Head really hurts. The Neurologist and orthopedic surgeons are speaking words to me that I dont understand. Apparently the nerves in my brain are dying and some parts of the brain are already dead. They`ve put me on heavy tranqiulizers and beta blockers. There is also evidence of Arterial Damage in my neck. I struggle with ocassional blindness in both eyes, as well as memory loss. I cant sleep. I have many tests that I have to go for with many doctors to see. they said that there are 18 scars that are in and on my brain as well as some open wounds that seem to be clotting. I honestly dont know why I am still alive. I feel sick. and the World is tilted to the left to anyone who reads this? can you tell me what to expect.

thanks.

                   Diagnosed with the disease March 2002   

P.S. I was a Trucker for 14 years. They took away my AZ and regular drivers licence.

I lost my Job as well and sometimes cant talk right, My words are slurred and my arms and legs will sometimes jolt out and shake for awhile. IS THIS NORMAL!!!!!!! OR IS IT GONNA GET WORSE?

Post Edited (Uriel) : 10/12/2007 9:35:21 PM (GMT-6)

Adrenomyeloneuropathy. So far More MRI `s than i wish to count. Many beta blockers and  pain killers that totally paralyize me. They want to cut the top off my skull off so that they can some way miraclous way repair these dead aprts of the brain. they have me scheduled for a (pls excuse the spelling) a Little shaky today. They want to insert huge needle with a scope in the end of it up through my shoulder through the carauded artery as well as a spinal tap in the lower back and one under the skull.

Post Edited (Uriel) : 10/13/2007 11:48:49 AM (GMT-6)