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.
I"m so sorry this is taking so long, but very happy to hear that this doc is able to interpret u'r signs/symptoms and lesions into a likely dx for u. As i know u'r aware, being in limbo with all those symptoms u have is (at the LEAST) frustrating. U have my thoughts and prayers friend on u'r visit in Feb and in the meantime do as Uppitycats said and report all new or worsening probs. I know it must sound horrible to hear, but i'm so happy that u'r close to a dx...to an answer...and can get on meds. Take good care and let me know how i can help u.
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).
I'm glad you posted this, your message was very clear and not rambley at all. You've been through so much and I hope this new neuro is the key to getting a firm diagnosis and being able to move forward with treatment again. It's such a shame that your old neuro confused and upset you by acting so abruptly (and wrongly by the sounds of it!).
You know I'm always here for you,
I am so glad you are on your way to treatment. I know it is a long time to wait but if you like your doctor it is worth it. Hang tough girl and know that we are all here for you. You add so much to this forum. Breathe and know it is going to be alright. You need to go and get your hands dirty and get that yard planted and maybe even force some cool bulbs. I know you would rather hear that you don't have MS, but you are strong and you will continue to fight. We need you to stay strong so you can continue to do battle against the tomato stealing army of squirrels that are a blight to this world. I am writing all of this so you actually know what rambling looks like.
Love and prayers,
I really, really appreciate the words of encouragement. I wasn’t exactly sure what I was saying, but I’m glad it made sense to some of you…lol. I continue to feel an immense sense of relief just knowing what is going on with my health…is that weird?
I finally saw the doc today after 3 weeks of coughing and wheezing. Apparently I have a lung infection. I hope this is why I am having more problems with my leg (which have now spread to the other “good” foot), and that this will resolve once I have the infection under control.
Since Gretchen brought it up…here is some true rambling for those of you who are following the squirrel gossip: the tomato-stealing squirrels seem to be gearing up for winter, and have become even bolder in their crimes. This morning two of them looked at me, ran down, snatched tomatoes, and then sat nonchalantly munching and dribbling tomato juice while I yelled at them. I am afraid I am no match for the little thieves, lol.
Post Edited (rhondab) : 10/5/2007 7:50:35 PM (GMT-6)
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!
Uppity, it sounds like the critters have trained your husband well. I’ll bet it is pretty entertaining to watch them “harvest” the garden.
Rhonda, thank you for your insight into the squirrel psyche. We have a variety of cherry and regular tomatoes. Unfortunately, the humans and squirrels both agree that the sungold cherry tomatoes are the most flavorful. You are right - the thieves will leave the regular tomatoes alone if the sungolds are ripe and available.
I can see the squirrels’ favorite pine tree from my bed, so I watch the drama unfold even while resting …I love it. I spend a lot of time home alone these days, but do find that squirrel and plant gossip and photography does help pass the time
Post Edited (Uriel) : 10/12/2007 9:35:21 PM (GMT-6)
I am sorry you are having such a rough time. Which demyelinating disease have you been diagnosed with? What tests have your doctors ordered? You need to have your doctors explain things until you understand them. If you don't understand, just tell them you don't understand and ask them to explain it again. Good luck.
Post Edited (Uriel) : 10/13/2007 11:48:49 AM (GMT-6)
Post Edited By Moderator (Gretchen1) : 1/3/2008 8:43:34 AM (GMT-7)