What else can go wrong?

Actually, I learned a long time ago not  to ask that question because the answer is LOTS!  I mentioned in my last post that I have started walking more now.  Since I can walk some, I haven't been using my wheelchair in the kitchen when I prepare my meals since cooking from a wheelchair is a bit difficult.  Since I started standing to prepare my meals, I started having trouble with dizziness after I stand for a few minutes, but only in the morning.  I thought it was my blood sugar getting too low since it was only happening in the morning.  I have a glucometer so I checked my blood sugar during these dizzy spells and it was in the 80s or 90s.  Then I checked my BP and  BINGO.  I couldn't even get it to register on my machine.  After the dizziness started to resolve, my BP was only 95/68.  That is not very high.  I wasn't getting blood to my brain.  That is why I was dizzy.  I tried several  things to see if it would get better but finally just went to the doctor.  She thinks maybe the paralysis episode I had may have messed up my autonomic nervous system.  Your autonomic nervous system controls all of those things you don't have to think about such as breathing, heart rate, BP, swallowing, sweating.  She did a bunch of blood work, which was all  normal, even my CBC which had been really abnormal in the hospital.  Now she is referring me to the cardiologist for a work up and wants me to notify Dr. Westgate.  I'm waiting for the cardiologist to get back with me because her 1st available appointment was the end of July for existing patients.  I would  just really like  my body to behave itself and work properly for once.  I have been doing my best to give it only top notch nutrition and  to exercise regularly at my ability level.  The least it could do it stop attacking itself.

Neglected

I promised myself  I was not going to neglect this blog once my medical crisis was over.  I need to make sure I keep up with it.  I need to come up with a writing schedule of some sort.  I'm still trying to get my life back to normal after 5 weeks in the hospital.   It takes a while.  I'm finally feeling more like my normal self; I have more normal energy levels, at least for me.  I have chronic fatigue so normal energy is relative.  The home PT/OT discharges me last Friday so I will start out patient PT on Tuesday.   This means my schedule is going to get a bit busier since I have to fit PT in twice a week.  While working with home PT, I have started walking a little bit again.  I can walk with a quad cane or walker around our kitchen table up to 3 times on a good day.  After that, my right leg, which is my weaker leg, gets very shakey.  Still this is huge considering 1 month ago I couldn't move my legs at all and could just barely move my feet a little.  Still no answers on what is wrong with me or if it will happen again.  I think not knowing if it will happen again is the thing that scares me the most .

I've been trying to clear off my unfinished project shelf in my sewing room.  I have quilts and other half finished projects that I started several years ago but never finished.  Usually someone needed me to sew something urgently so my bigger project got shelved then never picked back up.  The first UFO project I'm starting on is a quilt for Jeremy that is a TARDIS  from Dr. Who.  I've been working on it pretty regularly for the last 2 weeks when time and energy allow and I am almost done.  Weakness in my arms no longer allows me to quilt large projects any longer so I pay someone else to do the actual quilting.  I am hoping it will go to the quilters before the end of the month.  I'll post pictures when it is complete.

Lastly,  I am back on track with losing weight.  I've lost 7 pounds since being out of the hospital.   I am getting really close to my goal weight.  It's less than 30 pounds away now.  I'll know exactly how much tomorrow since I use my weigh in at the office as my official weight.   I feel so much better since losing weight.  I look back at my before pictures and can't even believe I was that heavy.  I never want to be that big again.

My Follow-Up with my Neurologist

I want to make sure I keep up with my blog and not neglect it just because I am out of the hospital.  There is still going to be a lot of things going on with my health and my life that I want to journal about.  Maybe people want to read about my life and  maybe not.  Maybe someone will read about my neurological problems and have some clue as to what is happening to me and help me find answers. 

Yesterday I went to my neurologist office and had a nerve conduction study done.  To my surprise, it came back normal.  After my ascending paralysis, I expected it to be abnormal and so did she.  If it had been Guillan-barre or CIDP, the nerves would not have been able to  respond but they responded normally.  The only nerve that didn't was the nerve that  came from my central nervous system down to my feet and back.  They couldn't get any response from that at all.  So I do not have CIDP like the hospital neurologist thought.  My neuro went through the numerous abnormal labs that I had.  Many of them pointed to generic autoimmunity, which we knew I already had.  One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the  symptoms for, but over half of the people with this have small cell lung cancer.  Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything.  I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances. 

I walked away from the  doctors office rather disappointed.  I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong.  She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system.   It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all.  My doctor can't tell  me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body.  Over 10 years ago we went through this limbo process before I found Dr. Westgate.  Then, I had several doctors tell me that my illness was psychological.  No one is telling my that now, but I think that period of time seriously planted some deep fears in me.  I'm so afraid someone is going to tell  me that  my illness is in my head like  they did 10 years ago.  It's obvious it isn't since I don't have reflexes and I  was paralyzed but it has now become a phobia.  I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial.  It's bad enough to have  to go though the trial of the physical illness.  The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.

On a more positive note, I had my 1st weigh in since getting out of the hospital.  I lost 2 pounds since my last weigh in, which was prior to going into the hospital.  It was hard to stay on program in  the hospital.  The menu there was very high in carbs and it  was very difficult to get extra vegetables.  The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert.  You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.