SPS article with more details about it

https://www.news-medical.net/news/20180903/Research-Faster-progression-of-disablement-in-stiff-person-syndrome-than-originally-believed.aspx

My SPS Journey

I want to bring awareness to a rare, incurable and one in a million disease. My hope is to bring others like myself a place to come to if you have questions or comments please feel free to do so. Any and all are welcomed.

You Are not alone

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Stiff person syndrome

This is my(JoAnne Cabunoc) web site, owned and operated by me. Acroynms such as SPS (stiff person syndrome) SMS(stiff man sydrome ) IVIG (introveinious immunoglobulin). the disease was founded by Doctors Moersch and Woltman in 1956. information is long so i suggest to do research on him and Mayo Clinic rhat treated the first of many.

Website links about stiff person syndrome

www.Raredisease.org

www.hopkinsmedicine.org

www.my.clevelandclinic.org

www.ninds.nih.gov

FYI: Please read carefully and agree to it by "yes i agree "

All pics, video and information on SPS is information gathered through neorologist as well as personal research. All pics and video are my property usung it without my permmision is a violation punishable. A report will be filed by me

What is STIFF PERSON SYNDROME

Contortion during an episode

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  Not all people have or test positive for SPS, although diagnosis can be made with a blood test that measures, if any, the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD65, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain. Not all SPS patients are GAD65 positive, you can still have SPS without being GAD65 positive.

Leg stiffened and both feet and toes contorted

This a web site from the Mayo-Clinic that explains what GAD is and GAD65 in detail. Please read it to understand how a patient with SPS is diagnosed and some aren’t.

https://neurology.testcatalog.org/show/GD65S

The beginning of SPS

This is me today

 In 1997 I first noticed how my back and legs were getting stiff more often and lasted longer. A few years before this, I did suffer a accident to my tailbone causing it to break. It took 6 months for a full recuperation. I attributed a lot of what I had the numbness, tingling and burning sensation to this for years. In 2003 I started to get full numbness and tingling in the arms, hands, head and partial face. None of this occurred all at once but intervals but occurred on a daily bases. In 2004 and 2005 spasms occurred as a precursor to the stiffness. For a long time I hid the progression from my family and continued to work and go to school as I did for a long time. One day while washimg dishes after family breakfast, both arms stiffened up and my hands and fingers contorted. my ex at the time thought i was playing but when he tried to help me pry them apart the tighter it got so i had

to ride it out until the

stiffness subsided

and helped me pry my hand and fingers apart one by one because

it was stuck. I continued to habe more symptoms in my face amd abdomen. The spqsms in my abdomen felt like someone was playing volleyball inside of me. my back could be seen, the spasms rolling around. Throughout the years I have seen 6 different Neurologists and a Rheumatologist all of which had their own outlook and diagnosis on me. The diagnosis were; Fibromyalgia, Lumbar Stenosis, Degenerative Disc Disorder, Dual Carpal Tunnel Syndrome with De Quervanes, Occipital Neuralgia, Bulging Disc L4 and L5, Mild Scoliosis and Mild Kyphosis. Blood test for Lupus and other Autoimmune Disorders were done and none showed except for Hypothyroidism (Hashimoto Type) and history of Breast Cancer. 

With all my complaints over the years in 2007 in August to be exact, I saw the last of 8 Neurologist’s Dr. Neal Prakash at Kaiser Permanente who happens to be new here to Hawaii from UCLA and a specialist in movement disorders and at the time he had been treating other patients who were with SPS in the mainland. Twenty minutes of going over symptoms past and present and tests that I have done in the past, he had 3 suggestions of what it could be I was going through. The three were Seizures, MS or Stiff Man Syndrome. He assured me that the last was a rare and incurable disease that could be possible but not positively it. He scheduled me for an EMG, blood test called Anti-Gad (Gad65)and an MRI on my back. If possible a lumbar puncture to see if there are any proteins in my spinal chord.

I did the Blood test first than the EMG. To my amazement as well as the technician the test triggered a major episode I never had that scared the hell out of me. The lights and the winding sound made me stiffen up in places like my shoulders, face and made my arms flare like a fish. My face stiffened so bad I could not speak one word but I knew what was going on around me but had no control. Episode lasted about 10-15 minutes but felt like an hour. After the episode I just felt so weak, the episode wiped me out. He put me in a room and gave me baclofen and valium then fell asleep. 

The MRI never had to be done because 2 positives out of three was a good enough reason to dx me with SPS and start treatment. My Anti-Gad test came back positive in high levels. Just for the record, not all SPS patients test positive, you can be negative for the Gad test and still ne diagnosed with SPS, Medication therapy started ASAP and my first round of Ivig was scheduled. Things happened so fast I couldn’t even decide yes or no to what was being offered nor read about the available treatments and the side effects. The medications were very sedative and the IVIG (introveinious immunoglublin) caused aseptic meningitis, drop in my WBC which I needed a nuepogen shot and a depletion in my electrolytes. Causing hypokalemia(potassium low), so low 2.1 i was paralyzed, i could no longer walk feom the elevator to the entrance of the ER. I was wheeled in and admitted and lucky to still be alive wirh potassium that low, most people die because it stops the heart.  

IVIG was canned and Plasmapheresis was introduced. It worked the best for me with the meds. Though I must say Klonopins after a long term usage can make you go crazy so I cold turkey against doctors advise and feel better off than on them. He advised to not do that with Baclofen. For 11 months of plasma it was good then things changed for the worse. My catheter was colonized with Staph which turned into Sepsis. Catheter was DC and than another was inserted after I was cleared by the infectious team. 3 months later Staph again. Same motions I went through but my body got more weary. Than in 2009 Staph/Sepsis occurred again this time fever of 107 that nearly killed me and put me in a coma for ober a weeks and a memory loss of what occurred prompted removal indefinitely of anything being inserted into my body because the risk of heart valve damage was high. Little did I know that it happened already. I have had A DVT in my Right Jugular, numerous clots in my chest, pulmonary embolism and an aneurysm is way too much for me.

 

SPS NOW

In September’ of 2014, my SPS went doormat. Symptoms not severe with oral medication, avoiding triggers like heat, stress, being startled just to name a few. 

In March of 2017, my symptoms came back full blown. SPS has now taken over my whole body. Stiffness in arms, hands, back and legs. Feet and toes started contorting again and spasms got so severe in my innards I had a hard time to breathe. 

I ended up in the hospital where the head of neurology at Hawai’i Pacific Neuroscience saw me and started me up on IVIG (introvenious immunoglobulin) Gammaplex. The milligrams were right but the rate of the infusion landed me in icu. My blood pressure went sky high and I was aseptic once again. The rate was slowed down and symptoms that landed me in icu subsided. The right rate was reached. The downfall was it took 8 hours to finish. But the doctor said if that’s what you can tolerate than that’s the way it has to be. 

I ended up from being able to walk to using a walker and now in a wheelchair. The stiffness and falls got too much for my body to handle and I hurt my face, head, back and legs from the falls. Once your body stiffens, the fall is inevitable and there is no way to even stop or break the fall. I fall stiff like a card board. Forward, backwards and even sideways. I’ve cracked my nose and gashed my forehead bleeding like a faucet because I’m on Coumadin. Fell face first into the wall and cracked my back by doing so because again I can’t lift my own arms up to safe myself. I have to wait til the stiffness passes and then I can use my arms and hands to lift myself off the ground. So that’s why I’m in a wheelchair. 

I eventually needed to add Plasmapheresis (blood Protein Exchange) to the already IVIG. The ivig wasn’t working alone so I had 2 catheters in my chest. One power port(under my skin) in my chest for the ivig and the other a perma cath that hangs out of my chest, both on the same side. It worked wonders. For 5 months and a clot formed in the line and needed to be removed. As of December of 2017, I have had only ivig. It’s fine. The doctor changed the medicine and dosage and it’s working for me. 

In April of 2017 i’ve  been having ivig done at home every 2 weeks on Tuesday, Thursday and Saturday for 9 hours. The nurse doesn’t mind and it’s the same company and same nurses on those days. 

I started OT(occupational therapy) and PT(physical therapy) in March at home and I’ve had great success. I’m determined to get out of this wheelchair and claim my life back. 

From this point on I will make entries on my ivig sessions, physical and occupational therapy, neurology appointments and how I’m doing.

update

i am using a walker by day and a wheelchair by night. As for the IVIG I have it done 5 days a week for 8 hours each day and it’s called Privegen. Things have improved but minor set backs at night with the walker. I have had 3 falls since using the walker. I had 1 concusion. So by day i use the walker and at night when I’m at my weakest I use the wheelchair.

Porta Cath used for Plasmapheresis

Plasmapheresis

This porta cath was used from November 2017 thru March 2018. It worked well, along with IVIG, but the cath had a clot at the end of it so the cath was removed. Had it not been for the clot, I would still be doing this with the IVIG. 

Other medical issues

Breast cancer(in remission)

Stiff person syndrome (active) Rnhabdomylosis (active)

Neutropenia (active)

DVT right jugular (treated)

Occluded chest veins (active)

Fistula right arm (reversed)  PE(pulmonary Embolisms) (treated) hypokalemia (treated/active) Hypothyroidism (Hashimoto Type) treated/active)

Hypocalcemia(resolved) Anemia(treated/active)

Hypertension (treated/treated) Staph/Sepsis(infiltrated vas cath)resolved

High cholesterol (treated/active)

Lucent lesion right posterior 10th and 11th rib (noted by X-ray 11/18/2016)

2 lesions on liver noted

ASeptic Meningitis (reaction to IVIG rate)

Severe Hypokalemia (transfusions as an admit)

treated Blood Transfusions (out patient)resolved

History of Severely low WBC requiring Neupogen shots at Kaiser Hospital resolved

 

History of Hospitalizations:

at Kaiser Moanalua/Castle Medical Center Have had plasmaphersis(at Kaiser Moanaloa/Queens Infusion

Center) and ivig.

Numerous perma caths, vasc caths and piccu lines I have had a perma cath and power port both on right side of chest Currently receiving ivig at home and Plasmapheresis at queens infusion center (11/17-3/2018)

Most reccent hospitalization was feom thanksgiving day for 5 days thereafer. i had a high fever, seizure, disoriated, trying to take meds that wasnt time to take, i was congeated etc... i was discharged when the pneumonia and disorentation and fever were under control. 

 

Surgeries: Radical mastectomy left breast Breast implants

Proximal realignment left knee patella

Left elbow Surgery

power port (right side chest) 

Other medications orally taken

1)Hydroclorothiazide w/triam 75/50 1 tab daily(high blood pressure) 2)Potassium 20meq 4 times daily (Hypokalemia)

3)Warafin 3 mg once daily(DVT/PE) 4)Levothyroxene 150mcg once daily(hypothyroidism/Hashimotos)  5)Percocet 10/325 1 tabs every 6 hours(SPS pain)

6) Oxycodone 15mg 1 tab every 6 hours(SPS pain)

7) Protonix 40 mg once daily(hiatel hernia)

8) Dilaudid 4 mg every 8 hours(pain) 

9) Lipitor 80 mgs once daily (high cholesterol)

10) Meclizine 25 mgs 4 times daily(dizziness)

11) Zofran 4 mgs twice daily(nausea) 12) Zoloft 100 mg at bed time (depression/sleep)

13) Remeron 30 mg at bed time daily(depression)

14) Xanax 2 mg 3 times a day (anxiety) 15) Vimpat 100mg twice a day 

16) Furosemide(Lasixx) water retention

Medications

Power port surgery

 

My current oral medication list for SPS: 1) Baclofen     Muscle relaxant commonly used for SPS.  Dispensed 20 mg tablets of which I take 1 1/2 tablet(30 mgs)  6 times a day. 

2) Tizanidine      Muscle relaxant commonly used for SPS.    Dispensed 4 mg tablets of which I take 1 tablet 6 times a day.

3) Valium     Commonly used to relieve the intensity and frequency of SPS symptoms     Dispensed 10 mg tablets of which I take 1 tablet 4 times a day

4) Zoloft    Used to treat depression that come along with SPS and to help sleep through the night.       Dispensed 100 mg tablets(Zoloft) of which I take 1 tablet at bed time.Xanax  

5)Xanax. Used to treat anxiety (fear of falling. 1 2 mg tablet 3 times a day 

6)Privigen Dispensed in 2 bottles with 20mg and 5 mg.  Start off with 500cc fluids, 2- Tylenol’s and Benadryl (via intravenously) IVIG rate starts of at 10 for 30 minutes followed with an increase every 1/2 hour until I have reached the max I tolerate at 37. After both bottles are done another 500cc fluids administered. Duration is 10-12 hours long with bathroom breaks.     Taken intravenously via power port every 3rd week.  Update on mgs on IVIG: from 25 mgs to 40 mg to help keep the symptoms at bay longer since I can’t do these infusions every 2 weeks. By the 3rd week (one week before infusion I would have symptoms of spasms and stiffness not severe but there. It’s as if my body knew it was time for my infusion)  Im currently on a total of more than 15 different pills for various problems as I have listed above. 

SPS Episode

2/2017 My left shoulder, arm, hand and fingers have stiffened. The video is under a minute though the episode lasted just under 10 minutes. Number one rule is I can’t be touched. Even if it’s for comfort, a rub on the back or a hug can prolong the episode and cause more harm than any good.

IVIG(introvenious immunoglobulin)

IVIG at home is so convenient. Especially with the long hours it takes to infuse me. Same nurses on designated days and they don’t mind one bit. Anywho, it’s been over a year and the right dosage and rate has been reached,,

IVIG Infusion changes

My dosage of Privigen changed from 200ML every third week 3 times that week to 200ML every third week for 5 days. Dosage was increased due to stiffness and spasms were still occuring. The change occured in mid September of 2018 and with the change with the increase has made a big difference in reducing the number of times to symtoms occured. i went from having them daily to just having them once or twice a week, triggered by stress or chqnge in weather(too cold or too hot). There is no cure for SPS patients, these treatments (IVIG, and many others like plasmapherisis, rituximab, cell cept and steroids) and oral meds 

FALLS

Falls occurred the first time using a walker. I would be startled and stiffen up. Falling backwards, forwards and sideways. It became to much to bare so I ended up in a wheelchair. 

After my IVIG dosage was reached I started to show little to no signs or symptoms of this dreadful disease. So I started using the walker with physical therapy. For a while things went well, then I got startled once again and fell. It wasn’t that bad, but then again while doing my laundry in September of 2018, I had another fall which landed me in the ER. I had fallen on the concrete backwards, landed backwards on the concrete leading to a massive hole and bleeding profusely. So my children and the neurologist decided I stay in the wheelchair until he adjust my dosage. Which he did and there were again no problems. But now I face anxiety of what if I fall? Or if I’m going to fall again. My mentally is stuck on that thought that even with a helmet I have received, I still am stuck on the thought of falling. I’m yet to change that mentality and only I can do that. It’s yet a work in progress and only I can change that. Will keep y’all posted on my progress. since the last fall i was doing great using the walker by day and wheel chair early mornings when everyones asleep, and by night by 8pm.   in Feburary 2019 the week before infusion i had 2 falls. one was forward due to obstuction on my way while using the walker and it was well past 9pm on, the second fall was i stiffend up in both arms while standing because i was rushed back to get my room to get my helmet what i forgot to put on when i left my room. the anxiety kicked in and fell backwards. i have a large hematoma on the back right side of my head and i didn’t black out or have any nausea or vomiting following the fall. i did not go to the ER but will call my doctor today the 25th since it happened on a sunday the 24th. will keep you all updated on the outcome. 

From one fall that caused 1 concussion

New Development of Seizure

I have had 3 separate incidents of seizures. Once in April and twice in May. All three times required ambulance transport. My neurologist, after the second seizure placed me on Keppra. The risks out weigh the benefits, such as cold sweats, nausea and swelling of tongue, so he changed it to Vimpat. Between the stoppage of the Keppra and starting the Vimpat, I had the third siezure. Which was expected after stopping one and going without one dose until the Vimpat could be picked up. I am scheduled to have a 4 day stay of EEG 24/hours at the neurological facility to determine what type of seizure I’m having. I will keep y’all posted on the outcome of the results and the days I went in for this study. 

I am scheduled for an MRI on my head with contrast on Monday June 2,2018. I will also keep y’all posted on the results. New development. MRI results show 2 white lesions on the top of my head. Everything else is normal. Another MRI is scheduled for November. Medical insurance will not pay for an MRI any sooner than that. Will keep y’all posted on the November results

September 2019

I have had 2 seizures one at home during my sleep my daughter found on the bed with blood covering my face and shirt was soaked with blood, so she called ambulance they came and took me to me to the ER they monitered me and i fell asleep and i had another seizure in the ER. I had no idea it was happening, so they strapped me down. Than when i woke up i was strapped down with padding on each side of my gurney, the nurse came in and said that i had another seizure so she said they contacted my neurologist who said to up dosage of Vimpat from 100 mg twice a day to 150mg twice a day. So now i haven't had any episodes since then.

I went to my EEG sleep study and did my MRI. On July 2, 2018, I recieves the news on my EEG shows that i m an epileptic. I am now on Vimpat 100mg twice daily. Side efffect has been nausea and cold sweats but more intensity. I was on Keppra 500 mgs twice daily but i had too much side effects thats it  had to be stopped.

The MRI showed with and without contrast 2’white like lesions at the top of my head on both sides. So another MRI will be sxcheduled. Unfortunately, my MRI results (hundreds of pics) were reviewed and and he showed me 4 that stood out for him and a concern for me. In four pics with and without contrast, there’s white hazy lines consistent with lesions found at the top of my head on both sides. I cried but got a hold of myself because this is all temporary. Everything can change. Then on the 4th of July, while trying to do my own laundry, I had an SPS episode and fell backwards on my back and the back of my head, causing my head to swell up and started bleeding. I’m on Coumadin for other reasons. But because my blood is thinned, the back of my head started pouring like a running a running water faucet. I managed to gain consciousness and crawled up the stairs, bleeding, into the house and crawled all the down to my sons room, awoke him and he took me to the ER. The doc wanted to keep me overnight but knew I didn’t want to so turned to my sons and instructed them what to watch for. It is now July 6, and I’m feeling fine, in spite of the pain, some bleeding and big lump I’m alive and wake up. I will keep y’all posted on the outcome ahead. 

 

July 11, 2018

Follow up with pcp/oncology

went well in spite of my Coumadin being stopped, he ordered blood test (6 vials) mostly CBC with differentials, CEA/CA(history of breat cancer) PTT/INR and Elecctolytes. Results will be available tomorrow except for the CEA/CA (it’ll take 2 weeks ent to the mainland)

 

update on on blood test results :

re start Coumadin 3mg once daily 

potassium increased from 3 times a day to 4 times a day.

 

I also received a call from my Neurologist who wanted to see me today but I couldn’t because I need 2 days advance notice to give my van ride notice. So Monday I’ll see him and why. I know he received the reports from my falls but also the 2 white lesions in my head. Falling backwards could’ve caused more damage and I know he’s gonna schedule me for another MRI. But I will keep y’all posted like I always do

 

update on visit:

Neurologist saw me and my bruising and gaping hole and said that I had a severe concussion. I should take it easy, ice it and keep it clean and dry like I have been. He gave me the option of putting a tube in or not. I said no and he was ok with that because I was taking good care of it and no infection. Follow with another (July 15) MRI and the lesions founds as well as the hematoma. Did my follow up with neurologist and another MRI will be done in November. Can’t do another close together because of insurance claims and such. i have been doing really good on meds and ivig that i only see my neurologist ever 2 months. Things are getting better as time goes by.. i see Dr. Graynor anotner meurologist with the Hawaii Neuroscience Group over in Queens Hospital here on oahu, hawaii. will keep y’all posted afyer March 20, 2019 when i see her.

Update on neurologist visit on April 25, 2019

When i walked through tbise doors, the receptionist and the nurses were in shock but so very happy for me. Did my usual weight(btw i never weighed that heavy ever in my life not sharing but a hefty amount of weight gained being in a wgeelchair for almost 2 years) and vital signs were all normal. Placed me in the exam room waitubg for him to walk in. When he did, His look was in shock but so very happy for me. I thanked him for all he has done all the while taking over my original neuro. His increase in dosage of Privigen (IVIG) making it from 225ML 3 times a week every 3rd week to 5 times a day AT 200ML an increase of 25ML. Oral meds remained aas follows:

1) 30 mgs Baclofen 6 times a day

2) 4 mgs of Tizanidine 6 times a week

3) 10 mgs of Valium 4 times dailt

I am so grateful to Hawaii Pacific Neuroscience (Dr.James Miscovich and team) for actively treating this disease and being aggressive with it.

My next appt is in July 2019 and i will update info on that visist. 

MANY IMPROVEMENTS

Since my last fall, i havent had any stiffness, spasms or seizures. I praise God for His help along the way on this journey of mine. I’m here to encourage and to help others like myself NEVER GIVE UP. I want to educate others who have a loved one or taking care of someone that has SPS. One thing about life, circumstance change as long as you are motivated and want that change. Even with the fear of falling my confidence is rising as days go by i’m motivating myself because i know i can and nothing can stop me only me and i choose to live my life fear free. Like I’ve said fear of falling has deminished and i am using the walker full time. So if i can get out of rhe wheelchair i was in for almost 2 years you or someone you know with SPS can and will get yoyr life back I am living proof tgat SPS is real and affects many people(mostly women). NEVER GIVE UP. NEVER GIVE IN.   

Physical Therapy

My PT has been on vacation since May 18. Will resume PT upon his return. No one at the Rehab is aware or educated on SPS like he is so i’ll feel comfortable, as they will too, wait for his return. 

 

My PT quit so I have another one that had enough time to read up about it and read up a lot about it and my case. I have been doing well with the walker. But i have a long road ahead of me. With all these new obstacles, he wants me to take it easy and not rush thing easier and slowly. Not to do it just because I have to but do it at a pace my body can do and will handle. Which sounds reasonable. I’m not gonna rush but take my time. 

 

August 8 I will resume PT. Will keep y’all posted as it happens

Follow up went well. Discharged me and said to continue excercises at home and keep using the walker at home when another person is at home with me. Continue using wheelchair out doors until IVIG increase has worked on me and the “startle effect” I’ve had from SPS. So I’will continue excercises and used the walker and had 3 episodes. Will keep y’all posted as time passes.

update. Update as of September 2018 I have been having aqua therapy and all is going well except for the days I was in the hospital. I am told to stay in the wheelchair and walk short distance like from my room to the shower. I’m a fall risk and can’t afford to keep hitting my head since I’m on Coumadin. I can’t walk unless someone is with me at all times. My sons interchange with each other. One goes while the other one stays and then vice versa. As of December 17 it’s my last day unless my neurologist sends in the referral to the therapist to continue strengthening my legs. Need a new wheelchair, walker and a medical helmet. Will follow up with the nurses at his office to do so. Called twice and they said they would be on it but they are so busy I’ll call them again today. Will call again to keep them on the ball. 

 

Physical therapy resumed in January and this 2 visits so far are on land (not aqua therapy). They’ve been working me hard. The last visit on land was today Wednesday January 23. I used the bike for 15 minutes, walked in the metal bars strip up and down, side to side 20 times each with no problems, sat and did 20 reps of sitting in wheelchair with rubber band and did shoulder stretches, I also did 20 reps standing up, did some legs lifts on my tummy and on my back worked on control of core with tucking tummy while squeezing my buttocks during hip lifts. My next visit will be Friday January 25 Friday doing aqua therapy. Those exercises  works well. Next entry will be after my next aqua therapy 

 Update: since Janurary 2019 i have been going to physical therapy but on land. Aqua therapy has helped strenghten my legs to the point im using a walker full tiim at home. i also use it on short distances outsude of home. ive motivated myself  to do theae thimgs ans not let fear of falling so mwny times hold me back from walkimg. i use a medical hwlmwt juat incase somethimg were to happen, my head hitting ground  wouldnt be as severe that i wouldnt bleed out like the past falls i've had. got a few more PT's on land and i'm doing one hell of a good job as the PT said to me. will keep yall posted on that.Feburary i resumed PT on land and i have the 26th and 28th scheduled. its during the week of my ivig but its ok becuase its land and not in the water. 

March physical has been on tuesdays and thursdays and going well. using the walker on every visit to seeing them instead of the wheelchair and my excercises entail the bike, treadmill, excercises walking with bands around my ankles back and forth holding the rail 3 sets of ten, walking forward and backwards heel to toe with one hand and using the cane walking around outside, quite a far distance with no incidents. its a good report.

Update april 2019

I have been going on tuesdays and thursdays even with my IVIG days, i just make the appointment earlier so i can still have my iIVIG after 10:30am. its  been going so very good almost excelent. From a wheelchair to a full time walker. I’m so proud of the team at Fukuji & Lum whos PT’s are awesome and also encouring and caring. Neurologist will continue my OT for another 2 months isnt that awesome? i am so looking forward to one day walk on my own. In Jeaus name i will do it!!! will update you all on further visits

 

May 2019

Scheduled twice a week for the month of  May. Using the walker full time day and night. Progressing in the right direction. Will keep y’all posted after the month of May 2019 is over.  Things are progressing in the direction.  I've had 3 falls in the last 3 months which by the way is good compared to daily. I'm so happy with PT and the outcome and the strength that I'm building  in both legs. its getting better and better as time goes by. 

Rheumotologist will include in my PT with Fukuji &Lum to help with my hips and my back. Looking forward to PT and the added exercises. Will keep you all posted with this new development. 

 

June 2019 Physical Therapy

All is going well as planned. I’m using walker and had 1 fall since the last in in the first of May 2019. I’m proud of myself progressing in tne right direction. Now i go to PT once a week for my legs and my hips will start after the legs are done at the end of July. Fukuji & Lum have been working hard with me, they started with cane and i did well with short distances. Will update y’all after July 2019 is over. 

May 2018 IVIG

IVIG on May 28, 30, 2018 and June 1, 2018 went well. No side effects inspite of another medication added for seizures, I did have that last seizure on a Thursday, just before my infusion. Infusion duration stayed the same,9 hours. Next round will be the week June 17. I will keep y’all posted on those infusions as well. The days remain the same, Tuesday, Thursday and Saturday at 10:30 each infusion day and I will update my next ivig as well as if any seizures occur.

June 2018

This months ivig went well. No adverse effects or reactions. It’s every 3rd week I do my IVIG. So some months I actually have it twice. Like for May 29(Tuesday) 31(Thursday) and June 2((Saturday) I had it done on June on the 19(Tuesday) 21(Thursday) and 23(Saturday). and my next will be July 9(Monday) 11(wensday) and 13(Friday). I normally do it on Tuesday, Thursday and Saturdays but I have my oncology follow up on Thursday the 12 and I will keep y’all posted on these days as well.

July 1 VIG

on June 30-July 3rd my dosage and days have changed. The dosage went from 25 to 40mgs. I have yet to have the schedule but it’ll be Monday-Friday. I will keep y’all posted on these days and hours.

 

Referral to see another SPS neurologist

I am seeing a Dr. Graynor for any additional treatmenets that my regular neurologist hasn’t been done yet. will keep everyone posted on the outcome and thats on March 20th 2019. 

I Saw  Sr.Graynor and is referring me to a Rheumotologist for further testing. Shes said my neurologist is doing what she would do in my case. Will keep yall posted as to the testing and outcome with the Rheumotogist she is referring me to Dr.Ambrocio. 

I Saw Dr.Ambrocio the Rheumotologist and did blood work and xrays on May 9th, will Follow up with him on May 16, 2019 on the results. I saw him with the results and the disc with the xrays on it and the blood work were good in my favor, nothing bad at all. No lupus, i do have arthritis in my knees, back and bursitis in my hips and he gave me 3 cortisone shots to help with the pain and i see him in September 2019. If your reading this(like you said you would) this is a shout out to you doc (LOL) for taking care of me and taking intrest in me(my disease) and can say that you treat the ”stiff lady” 😂😂. Thank you doctor for taking care of me. 

July 31-August 3 2018 IVIG infusion

Firt 5 days of infusion at 200ML per with 500cc fluids before and after each infusion. Rate of infusion starts of at 12 slowly increasing to 37 max my body can take without blood pressure rising or having headaches. There was no fever or blood pressure problems. Except for it dropping down to 91/87. But overall it went well. Two days of headaches prior to infusion due to lack of sleep. Will keep y’all posted within a week to see if the increase of dosage and days helped control the spasms I’ve had one week prior to the next infusion. 

 

December 2017 infusion 

went well no problems. 5 days as usual

 

Janurary 2018 infusion 

went well no problems. 5 days as usual.

 

February 2018 infusion 

went well no problems 5 days as usual

 

 

 

August 20-25

All went well. Because of the storm, my IVIG was postponed on Friday to Monday the 28th but all went well. Still using the walker at home. And had only 1 episode so far. Will keep y’all posted

with my next IVIG in September.

 

 

September 11-15 is scheduled for my IVIG  will keep y’all posted at the at the of the 5 day a session. Things went well no problems to report. 

 

October 30- November 6 went well. No fever or chills but still in a wheelchair because of too many hits to the head. 

 

Over the thanksgiving holiday, I spent that day and 5 more days in. I had a severe seizure triggered by a high fever related to pneumonia and laryngitis. I was quickly taken to the ER and kept in. My sons had to make the decision and I don’t regret it one bit. I came out just in time for my next IVIG the following Monday.

 

But because I had an appointment with my oncologist on Friday they started me on a Sunday thru Thursday. It went well no fever, BP and pulse was normal. My next IVIG falls on the Christmas week. We’ll see how that goes. Will keep y’all posted. IVIG will start on Sunday and Monday, resume on Wednesday, Thursday and Friday. Tuesday will be a day off for Christmas for the nurses. 

 

my last visit with my neurologist he referred me out to another SPS specialist who’s name is Dr.Graynor. Still have yet for insurance approval. She would have more ideas that would work more than the IVIG and meds. Will mention cellcept and rituxan. I will keep y’all posted when I have that appointment.

 

I have an appointment scheduled with Dr.Graynor on March 20 at 7:45. The same day as my IVIG but earlier than March 2019. Will keep you all posted on this.

 

 

December 2018 went really good. i used my walker ther entire time at home versus using the wheelchair that i had been using for over a year. 

 

January 2019

New year and new me. IVIG went wonderful. no spasms or stiffness since the year started. So looking forward to a great atart for 2019

 

February 2019

Also went well. seems like i’m having it twice this month. i had it late of January into early Feb and I'm having it again next week (24- March 1 2019) anywho, i’m not complaining. I‘M still having my PT and IVIG even with the catheter on, no more aqua therapy just land physical therapy and i still can do it because  i’m not in the water, which we do walk on land. I’d like to thank the aqua therapy team over at Fukuji & Lum (here on Oahu, Hawaii) y'all did a wonderful job getting me ready by stregthening my legs for the land exercises. 

Keep y'all posted on my PT. til than

ahui Hou❤️

 

Feburary 2019

today is the 25th and my first day of five sessions for this. Will keep y’all posted after the last infusion. Things went well no problems to report.

 

March 2019

i was suppose to start march 18th but i had an appt on the 22 so infusion started on a sunday the 17th for my daughter, through tuesday and resumed on thursday and friday and things went  well. 

 

April 2019

scheduled for April 8-12 will update you on these infusions but so far things are going well. Ivig will start on monday thru thursday and again on a saturday (13 my bday lol) because of family issues that have to dealt with in courthouse. But i will keep y’all posted on that outcome on both ivig and court.

update on IVIG:

Everything went well was able to finish all monday thru friday sessions. as far as my daughter she didn’t go to court because she had a set back on her mentality and what she did. she is safe and at home with me. 

next IVIG is April 28, 2019-May 2,2019. I will update you all on the outcome. everything went well no problems to report. 

FYI: IVIG has been working with no side effects just great outcomes 

May 20-25,2019

My next round of IVIG Monday-Friday will keep you all posted on the outcome. ivig went well with no problems. normal vital signs and 9 hours of infusion.

June 10-14, 2019

Sceduled for ivig scheduled. will keep yall posted on the outcome. 

 July 1-5, 2019

Scheduled for Mon-Fri will keep y’all posted after the week is over. this infusion went well. 

July 23-27 (Tuesday-Saturday)update 

I went to the ER  to have my power port checked because when my nurse went access the port, pus came out and i went  to the ER a little to late he gave me by IV antibiotics and one by mouth. They also did blood test and culture by blood and by site(pus drainage from the port) so i will my neurologist on August 2 to folllow up to remove the port and put in a new port on the other side of my chest. IVIG continued as planned via periphial needle until a port can be put in. will keep you all posted on the outcome after my appt with my neurologist. 

September 2019

I started to having IVIG every other week for 5 days straight  for 8  hours each day.  I have had 3 falls since i started this. But it takes some time for it to be in system consistently. 

 

October 2019

This month i have had 1 fall since starting IVIG. But its better than 3 falls, so you could say that i am better. This week is the last week of October treatments and i must say that i have'nt had any falls the last few weeks. Praise God and thank you Jesus and all your Angels that surround me all time. 

 

 

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