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Everything posted by JBG

  1. Hi, I've been taking 25mg/once a week of MTX for 6 years. I feel very fatigued, but my joints don't hurt as much. My Rheumatologist says it takes at least 3 months to kick in. Regards, JBG
  2. Hi there! I also had cervical spine surgery for stenosis (fusion and fixation with metal rods and screws C4-C7), but the posterior way. It was on Oct. 24, 2011. What pain!! The neurosurgeon warned me that going through the posterior way would be more painful, he didn't want to do mine anterior because of my swallowing problems from the SD. I'm still weaning out of the brace and just started PT yesterday. It certainly is a long road of recovery. All the best to you. Regards, JBG
  3. Thanks so much for the replies. I saw my surgeon today. He was so pleased from what he saw in the x-ray. I still have to wear a cervical neck brace for 2 more months. That's when the surgeon wants to see me again. He also said that I'll start PT after I get out of the brace. The doctor was so upbeat and really made my husband and I feel good. I saw in the x-ray the screws and rods the surgeon used in my neck to fixate it. I do not need to carry a card because the hardware is titanium.
  4. I also have CREST and experienced a 90 percent coronary blockage in 2003. I had a stent inserted. Since then I've been fine with my heart symptoms. The doctors said the blockage was not from having CREST.
  5. Hi all, I finally had the cervical spine surgery I was scheduled for. All went successful. I feel like I was hit by a truck. I had the surgery on Oct. 24th, stayed in the the hospital for 4 days then went to rehabilitation facility for 2 weeks. I now have a neck brace on. I had 3 levels of my spine fused. While in the hospital and rehabilitation facility, my blood pressure was low. That's how it is all the time. I am on 2 blood pressure meds for severe Raynauds. Because of the low BP, I was taken off the meds. I tried convincing the nurses that I needed the meds. Finally after having v
  6. Congratulations to all!!! Thanks for all your hard work and support.
  7. Thanks for all your good wishes. I truly appreciate it.
  8. Hi, I was the one who started the cervical stenosis thread. I don't really have any pain from the condition, but the numbness and tingling sensations are quite bad. I too had an MRI and it showed that the stenosis is really severe. I am scheduled for surgery on October24th. I was told the stenosis is from wear-and-tear (arthritis). I'll be 50 tomorrow. It could be from the Scleroderma. I have CREST. Hope the thread helps you. Please PM me with any questions. Regards, JBG
  9. Buttons - My neurosurgeon told me the same thing. He said in my case I have no choice because of my swallowing problems. Jeannie - Thanks so much!! >> Has the doctor given you any idea how long you will need to be in the hospital Up to 4 days. >> what your recuperation period is likely to be? Bad pain for 2 weeks and 6 weeks to feel decent.
  10. An update from me... I went to the neurosurgeon yesterday. He said that I definitely need to have surgery. The cervical stenosis is very bad. Due to the swallowing problems that I have, I'm not a candidate for them to get to the spine from the front. Therefore, I need to have open back surgery. The surgeon said this type of surgery is more painful than if they went in through the front. The surgery is scheduled for October 24th. Thanks for all the replies.
  11. Jeannie - Please let us know how you make out with your tests. I see the neurosurgeon on Thursday. All the best to you.
  12. Thanks so much for your replies. I really do appreciate it. Buttons - I was told the same thing as you. If I don't have the surgery, I can become paralyzed from the neck down. I also have the same symptoms, eg. numbness, tingling, etc. What a year it has been for me. I also contracted Valley Fever. What's next?
  13. I have CREST, Lupus and asthma. This past week I was diagnosed with Cervical Stenosis. The neurologist said that it can be from an old injury, I'll be 50 in a couple of weeks, as well as from the scleroderma and Lupus. He is sending me to a neurosurgeon. I have an appointment with one this coming week. The neurologist said the stenosis is severe. I had MRIs taken of my spine. He and the radiologist both said it's not good. Any advice is welcome. Thanks.
  14. Thanks so much, Susie and Chopper for your replies.
  15. Thanks so much for your replies. Susie - I have the same obstacles as you, e.g. re-absorption of my finger tips. I also played softball on school teams and outside of school. I used to have so much endurance. I'm now so out of shape. I've had a rough year and half, i.e. my dad passed away, my husband had surgery, as well as I had foot surgery, and I haven't worked out for all this time. I've lost quite a bit of weight and all my muscle tone. It's quite depressing knowing what I did before I got sick. Jeannie - Thanks for the tip and link. I have to check out the thread you mention
  16. I have CREST and Lupus and I'm fatigued most of the time. Before 1998, I had so many hobbies that I can't do anymore. I used to bowl, do embroidery, long distance cycling, plus much more. On days I'm feeling well enough to stay up, I feel lost because I no longer have the hobbies that I loved. It's also difficult to type because my left hand is very tight and my right hand fingers are curled. I'm looking for suggestions for hobbies so I could get out of this rut. :emoticon-dont-know: Thanks so much. JBG
  17. Thanks for all the replies. I had a follow-up with my new rheumatologist today. She said that besides CREST, I do have the Lupus anti-bodies. She also said that the medications that I'm taking for the CREST, methotrexate (25mg/week - max amount) & lefludamine (20 mg/day - max amount), is the same as if I only had Lupus. Therefore, my medications are not being changed. I also have been going for blood work every 2 months, so that would stay the same too. She wants to see me in 3 months. I've been hit with so much this past month - Valley Fever/asthma and now Lupus on top of the CR
  18. Hi all, After being so unhappy with my current rheumatologist, I decided to see another one. I'm glad I did. She recommended doing a complete blood work. The results showed CREST, which I knew I had since 1998, but also showed positive for Lupus. Anything greater than or equal to 10 is positive, I have 14. The last time I was tested, 5 years ago, I was negative. I'm seeing the doctor on Wednesday for a follow-up. What a difference in doctors. The one I was using, didn't do any tests except for when I asked him. Because I recently asked for a chest x-ray and PFT, it was discover
  19. Thanks for all the responses. My pulmonologist wants me to have another CT scan in 3 months.
  20. Hi, I previously posted saying that my chest x-ray and CT Scan showed that I had lung nodules. In addition, my PF test came back abnormal. Since that posting, I had 2 blood tests for Valley Fever - one to see if I had it and one to see if I still have it. The test to see if I ever had it came back positive and the other came back negative. I saw the pulmonologist today. He re-read the x-rays and blood tests that I had taken. After a thorough exam, he said it was probably Valley Fever that caused the nodules. I was very sick with flu like symptoms back in October, but the Urgent C
  21. Thanks so much for your responses. I'll get the official PFT results next week. In addition, my rheumatologist is arranging for me to see a pulmonologist. I'll keep you posted. Regards, JBG
  22. I wanted to know if anyone else experienced lung nodules, as well as a PFT result that showed that there maybe a possible obstruction. I have no symptoms. I do have CREST/Systemic with severe Raynauds. The CREST was diagnosed in '98. Please give me your thought. Thanks, JBG
  23. I also have CREST/Systemic SD and experienced TMJ pain. Back in 2002 I saw a TMJ specialist who treated me with injections. The pain was getting worse, so he sent me to an oral surgeon. It was the oral surgeon who diagnosed my problem. He said from the SD it caused arthritis in the TMJ. I had an MRI taken and it showed that the top 1/4 of the joint eroded away, as well as the cartilage (whole disc). I needed to have 2 extensive surgeries to correct the problem - including breaking my lower jaw and wiring my mouth shut for 5 weeks. The two surgeries were 7 months apart from one another a
  24. I was awake and talking during my 5 sympathecomy surgeries. For each of them, I was given a nerve block, as well as some good drugs that were to put me into lala land. I wasn't able to see anything other than a curtain that was placed between my face and the arm/hand that was being operated on. I remember I was speaking with the surgeon so much that he told me to talk to someone else. :VeryHappy: I too like to be up during surgical procedures.
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