Hi all, I'm new to this site and need a friend. It's about MS HUG and Pneumonia.
Hi, I am new to this site & am having a hard time typing because of MS so please bear with me. I've already erased my original question by accident today. I just spent 14 days in the hospital, admitted by emergency on 8/20/09 for pneumonia. The "hug was unbearable. I had multiple doctors, multi antibiotics and was told by one Doc that he "didn't BELIEVE in the hug" He also said MS "doesn't cause pain." and then accused me of "drug seeking". I HAD been hospitalized in Jan 09 after a bad sinus surgery, then with C diff right after. My MS was diagnosised in 2/07 when my right leg went numb to the hip, my foot was a block of wood, I was over emotional & had electric shocks in my neck. Then a few months ago, my BP went up in the afternoon with the hug. In the mornings, it was upper back pain. The hospital said iit was pnuemonia and treated me for it. They also put me on soulmedrl IV 1000 mg 3 hour push for 5 days. I am now home and the hug is still there, but less along with the original symptoms of MS in 2007, but less extreme. Has anyone had late afternoon symptoms like these? I am so tired and my MRI did not show new lesions. It seems I had an inflamed gallbladder too. I feel very alone and can't control crying. The symptoms are all over the place and my poor family seems overwhelmed. Please help if you can. Katkan
OK I finally see your question. Unfortuanaly I have never xperienced the MS Hug, but I understand that it is real and painful, and not fun, and it really aint a hug at all
, the doctor that you had said he did not believe in it probably because his knowledge of it is limited, you see what we donot know, we dismiss
so do not be offended, all right. Do you have a Nuero, if not you need to get one, and soon! Depression goes along with MS so do not be alarmed. When you talk with your Nuero you may want to ask for something. I do not take anything, I am a naturally upbeat person, if I feel myself getting down, the shower is my crying stall, so when I finish crying in the shower, my eyes are no longer red, and it washes the blues away. Plus I do not have enough sense to get depressed
at least that is what they tell me! But it is all right to get depressed sometimes, it is the natural order of things, it is like going to the bathroom, hey such is life! MS is so different in all people, it is so different, mine did not show up until I was 44, and I was told that I had it allmy life, imagine that! But hey aint I lucky! So dry your eyes, keep it moving. I buy expensive handbags, to make myself happy and it works. I do crafts, I give them aeay, my payment is the smiles on their faces, and the joy I get from making them. Take care of yourself, love your husband, enjoy life, and just be happy, crying is fine, is washes the pupils, they need it from time to time. sherry/smomdukes
You have many friends on this site, you will see!
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Katkan
Tuesday, September 08, 2009 at 11:40 AM
momdukes
Tuesday, September 08, 2009 at 12:59 PM
Sorry to hear about your parents my mom has Alz. she is doing pretty good right now. Yes you should start on your MS meds, it may help some, I am no doctor but it may make you feel better. Try not to stress, it only makes things worst, just breath, take it easy, when I stress my bladder goes hay wire, so take it easy. Just remember you have many friends here, who are going throug the same things that you are ging through.
sherry/smomdukes
Hi Katkan,
My goodness you have been through alot recently. First things first. Many medical professionals (who are not neurologists who treat MS) do not know that MS can cause pain. It is only recently being discussed more openly in the literature.
I have an online friend who is an ER nurse. We were talking last year and I mentioned some pain that my MS was causing me. She said - "wait a minute....I didn't know that MS causes pain?" My reply was - absolutely it can and does!! She is someone who has been in the business for over 30 years and had simply never learned that fact.
It sounds like you experienced a double whammy with an MS relapse and pneumonia. The high doses of Solumedrol is extremely tough not only on the body, but also the mind and emotions. Read - How to Manage an MS Relapse: The Use of Solumedrol. And some people have a really hard time with the oral taper. For instance, I finally realized that I can't use prednisone. My body just doesn't react well to it. Instead I use decadron as the steroid taper.
Please try to be very kind and patient with yourself. You've been through alot and still have a ways to go before you're feeling strong again (I presume). It always takes me at least a couple of weeks after the Solumedrol to start to feel better.
Like Sherry recommended - if you don't have an MS neurologist, please find one. There are medications which can help with the TN, nerve pain, and spasticity. Talk to your doctor about short-term meds to help with any anxiety you might be feeling from the steroids. And if you have experienced long-term depression for any length of time, please consider asking your doctor about some medication which might help. It could give you back some of yourself.
I hope that you are feeling a bit better from when you wrote this. And again, welcome to MS Central.
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Katkan
Thursday, September 10, 2009 at 04:19 PM
Hi Lisa, Thanks so much for understanding. I do have a Neuro Doc but he didn't have hosp privelages where I was taken by rescue. He said he would have sedated me for that treatment. Before being hospitalized for pneumonia, I felt kind of MS "funny". NOW the same symptoms, only worse. I am on a very low does prednisone taper, down to 20mg daily. This is day 7 from the solumedrol, 100mg, once daily 3 hour IV push, started by the Neuro Doc consult (not my regular Doc). This went for 5 days before their MRI results told them there were no new lesions. They stopped treatment and sent me home immediately. The hospital Doc told me he would have treated pneumonia the same way. Never heard of this. My Neuro Doc gave me 7 days of medicine to take the edge off and increased my baclofen. I also have terrible swelling and pain in my right knee. Could this be related? I have arthritis, but this got so much worse in the hospital. I've been on & off prednisone since May because of the lungs. I think the unbearable stress, from the hospital mistakes, may have had an effect on the MS. As a professional artist and vocalist, I usually handle stress pretty well. I hope all this makes sense. (Looking forward to learning MS abbreviations.) Any thoughts you have would be a blessing. Katkan
Hi Katkan,
I see that Lisa gave you a very comprehensive response.... Just thought I'd add two things. She mentioned an MS specialist, and you responded with your neurologist. Just make sure your neurologist IS and MS specialist. It makes all the difference in the world. Also, I've learned over the years that there can be leisons without symptoms and symptoms without leisons. Although leisons help the Dr. understand disease progression, it doesn't mean that your symptoms are not your MS just because they don't see additional lesions. I hope you can follow that.
I've had MS for 21 years (diagnosed at 20 yrs old). I take medication for many of the symptoms you describe and all are well managed. I've been on Copaxone for 1 years and Rebif for a few months. Having great results with both. I've also had a lot of luck with anti-anxiety and anti-depression drugs. I highly recommend you look in to this with an MS specialist.
There is a lot you can be hopeful about.
I hope you find relief soon.
All the best to you.
~Amy
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Hi sherry, can't think very well, writing is hard. i'm having some kind of reaction to the pred. taper after 5 days on soul iv. called neuro doc. he says i have to call the "hospitalists" (at least 10 different docs who treated me for 14 days in the hospital & the doc who doesn't believe in the hug or the that MS causes pain.) neuro says i need treatment for the anxiety, TN & muscle spasm. he may or may not help me. waiting for a call from his nurse. i don't even know who to call. they considered me a "problem" on the oncology ward & dismissed me with obvious contempt. i would draw or paint, write, or work on my mini sculptures but my hands tremor and i can't focus. my primary care doc just returned from the wedding of her only daughter. i called her last week about the meds and her office said she was doing 45 patients a day to catch up. she never returned my calls, one of which i don't remember. they were annoyed with me. one of her scripts is about to run out on me & will make me sick. it's hard to tell which symptoms are medication, MS, or pneumonia, which is supposed to be gone. i'm really frustrated & never expected this. even my dentures hurt to wear, my mouth is full of sores. i guess i was in denial. i'm going to post something i wrote after my first dx in 07. guess i have to start MS treatment. been afraid to do it. help if you can, just listening to me is helping. the minutes are light years long right now. i hate the loss of control. my parents both died of dementia. God bless all of us who weep.