I have alot to be thankful this year.

I am truly blessed.

I had my IVIG today and it didn’t go as well as usual.

The morning started off fine, until one woman, who came in for a transfusion kept coughing. Her son said that she had a cold or was getting over one, but the way she was hacking and coughing didn’t sound like a cold to us. The nurses moved her into the private room for her transfusion. I hate to say this, but the rest of us in the room were very glad they moved her. Each time one of the nurses needed to attend to her, they put on a face mask and gloves before they entered the private room.

The next thing – I went to the bathroom and just as I was going to wash my hands, my IV comes out. What a mess! My VERY expensive medication is running all over the floor, my arm is bleeding and I’m trying to stop it and get the bathroom door open at the same time for help. I finally get the door open, call Kaye and all three nurses come to help me.

After all the excitement has died down, my IV needs to be restarted. Problem: we can’t use the same vein. Kaye ends up putting the IV in a vein in my wrist. Ouch! My wrist still hurts.

I’m paying for yesterday’s excursion to the Dog Park.

It was downright cold yesterday morning.

I’m still trying to understand these adjustments for CIDP. I made sure I was "layered up" before I left the house and didn’t stay out long, yet this morning I have a raw throat, stuffy nose and a sulking dog.

It is COLD outside today! We had a hard frost last night.

Mister and I are off to the Dog Park today, and then we are going to PetSmart to get his nails clipped.

Was talking with Kay at the Day Treatment Center at Rex. I’m trying to get the date of my IVIG changed. I need to have it done on the 23rd, but Kay wants me to have it done on the 21st. The reason for the change is this; they want to keep the 23rd open for people who may need emergency blood transfusions before the holiday. Well, I can understand that, but I’m kind of in a similar situation. I’m trying to get my infusion done as close to the holiday as well.

Kay suggested I actually check into the hospital to get my infusion. I told her just to forget that idea. She’s totally lost it. The last thing I want or need to do is check into the hospital the day before a holiday. T here is no telling where or what part of Rex I’d end up end or how long my infusion will take to complete.

Having some issues with my blood sugars for the last few days. My afternoon and evening readings have been running higher than usual for some reason and I’m having a problem getting them back under control. I’ve sent an email to Cheryl for her input and I’m waiting for her response before I make any adjustment to my Basal settings on my Insulin pump.

I also called my insurance company to make sure this pump is covered under my renter insurance. According to the Mini Med site, "The Paradigm Platform has a list price of $6195.00". Unbelievable!

Hard to believe this little piece of equipment cost so much.

Went to Aqua Therapy today and had the pool all to myself.

I kept an eye on the time today and didn’t wear myself out.

It was nice. Something else nice happened.

I managed to climb up two of the ladder steps.

I’m getting there!

No sooner than I get one thing regarding CIDP under some sort of control, than something else pops up.

The "thing in my throat" is related to CIDP. It seems that a few of us have this problem (dysphagia = difficulty swallowing) and it’s something that bears watching. I’ll be sure to mention it to Dr. Schecter when I see her in December. Damn!

Thank GOD for whoever started the Guillain-Barre Syndrome website. It has truly been a comfort. I’ve been able to find information on this site regarding issues I’ve gone through when it hasn’t been available anywhere else.

It has truly been a blessing.

Don’t know what going on. Been feeling nauseous for the last few days and something is growing in the back of my throat.

Woke up Saturday and Sunday with a sore throat. But with this crazy "A" weather up here, what can we expect? Saturday morning it was in the 30's, but that afternoon it was in the 70's. Sunday was in the 70's, today it was around 76.

Decided not to take the flu shot this year. I'm just too scared.

I'm praying I made the right decision.

My throat is sore AGAIN this morning.

I just need to give up sleeping late as long as I’m taking these diuretics.

My legs and feet are acting up again.

The cut looks okay today.

What a morning! It’s nice and chilly outside. Mister and I are off to the Dog Park, after I pop a cough drop that is. My throat is raw. I need to nip what ever this is today.

Happy Birthday and Veterans Day to my Father.

These shoes are just a little too big and something slipped down between the inside of the shoe and my foot and managed to cut the heel of my left foot.

It's a good thing I check my feet on a regular basis.

Thinking about in-home daycare: http://www.geocities.com/michelles_daycarehouse/

Had my IVIG today and everything went well.

I felt so good today; Mister and I went for a walk. We walked down the street where the substation is. I haven’t walked down that part of my housing area in months.

My strength numbers have improved, but I still don’t have the strength I need to get up. I found this out as I was cleaning the commode. I stooped down to reach the bottom part and I got stuck. Good thing the support rails were there to help me get back up.

I had my PT evaluation today. Good news. My strength numbers have increased. All that work in PT has paid off.

Yea me.

Rough evening/night last night. My legs and feet were heavy and aching, ended up taking two Amitriptylns before the night was over. Between getting up to go to the bathroom and letting Mister out, I ended up sleeping later than I wanted to this morning.

I posted my question regarding pain on the http://www.guillain-barre.com/ forum to see what responses I would get.

Here is a response from DocDavid: "the answer is quite simple, neuropathic pain tends to increase in the evening and is worse at night. This applies to any neuropathic pain, whatever the cause. DocDavid"

Doc David is a REAL MD, what field I don't remember. But like all of us, he is well versed in CIDP.

I wish someone could tell me what is it about the nature of this disease that causes us to have so much pain at night.

This is a question I want answered when I go to Chapel Hill in January.

Just got my test results from Cheryl.

"Your labs look good in that A1C was down from 8.5 to 7.1. However, your serum protein continues to decrease which means you will continue to have swelling. I need you to go on dietary supplements daily - like Ensure - they make one for diabetics - get that one. We will recheck your serum protein levels in a few weeks."

Went to PT today and did upper body workout. Managed to increase the weights on one of the machines. I got my final clearance for the pool, so I signed up for that today as well.

The great flu shot debate is still raging. No one has yet to answer the question of should we get a flu shot. I've checked the http://www.guillain-barre.com site and they're debating the issue. Some say yes, but most are saying no.

Cheryl has me down for a flu shot, but I've asked her to check with Nancy before we go through with it.

I'm also going to ask Cheryl for a FULL time return to work note starting next Wednesday. I won't know unless I try.

Here is a post from one of my online pals regarding a treatment option for CIDP:

ME AND MY NEUROLOGICAL ILLNESSChronic inflammatory demyelinating Polyradiculoneuropathyresponding to Rituximab

Dr.D. D. Bodley-Scott Manor Lodge, Lower Pennington Lane, Lymington, Hants, UK;E-mail: ddbs.lymington@btinternet.com

Having retired from general practice 4 years ago I am writing an account of an unusual disease responding to an unusual treatment.

Inexplicable bouts of evening fever occurred through 1998 when I was 57-years-old. At first I did not associate these with the onset of bilateral ulnar nerve paraesthesiae in early 1999. My partners had kindly purchased a lap top computer for me so that I could also work as practice manager.

I had spent hours learning to use it, sitting in an awkward position, so I assumed I had a compression neuropathy of the ulnar nerves.I continued life as normal, working hard, riding my horse on my half day off, and running a watch repair business in the evenings (I had qualified as a watchmaker 25 years earlier).

I ignored the numbness that developed on the lateral borders of both feet because I had a previous history oflumbar disc disorder. At the end of 2000 I began to notice unusual fatigue and shortness of breath when ascending stairs to see patients, eventually I found it impossible to do a full day’s work without a rest in the afternoon. I took myself off for routine bloods and discovered I had a haemoglobin of 9.2g/dL and a serum creatinine of 250 umol/L. I consulted my own general practitioner and went to see a renal physician, and a neurologist who told me I had a compression neuropathy. Relieved that I did not have motor neuron disease, I failed to query the unusual fact that I apparently had four separate nerves being compressed. Investigations by the renal physician, which included a vasculitis screen and renal biopsy, failed to find the cause of my small contracted kidneys with chronic interstitial change.

I retired in May 2001. Erythropoetin improved my anaemia and fatigue, I felt well, took my Border collie dog for a long walk on the marshes every morning and worked full time in my watch repair business. I played at the bridge club on Monday afternoons and attended Rotary lunches on Wednesdays. Life was great; my renal impairment deteriorated only slowly and the repair business was thriving.

One morning in July 2002, walking back from the marshes, my legs failed to move forwards. Fortunately my Border collie was already back on her lead – she went into power-drive walk and towed me home. I managed to hobble at home with a walking stick but was not safe enough to walk the dog. One evening when taking off my jersey I fell over when my vision was obscured, thereafter I had to undress whilst sitting down. The occasional evening chills and fevers continued. Shortly after all this, at a routine appointment with the renal physician, loss of position sense and sensory ataxia were confirmed leading to a rapid appointment with another neurologist. His clinical examination showed total absence of any tendon reflexes, symmetrical long sock and short glove sensory loss with gross sensory ataxia and weakness in several muscle groups leading to a diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), later confirmed by nerve conduction studies. Blood was analysed to exclude other causes of peripheral neuropathy, including protein electrophoresis to exclude paraproteinaemic demyelinating neuropathy.

Treatment started with prednisolone and azathioprine, which gave an initial, but unsustained benefit. The neuropathic pains then started. They began after lunch every day, it became uncomfortable to sit in my armchair, my buttocks were tender and the pain spread down the back of my thighs. By the time the news on TV started at 6 o’clock I had to stand or kneel to watch it, in the early evening the pain increased in intensity causing me to lie on my face on the sofa, crying out at times with the pain, achieving temporary relief by gently slapping my thigh.

Eventually I would go to bed with the strongest analgesic I could find and sleep for perhaps an hour. I would then awake with increasingly severe pain also affecting my upper arms. Analgesics had no effect at this stage, sleep evaded me, at times I would cry out with the pain, at other times weep. By 2 a.m. the pain would subside allowing me to sleep. In the morning I would awake at seven, gloriously free from the pain, so much so that at my morning appointments with the neurologist. I would not even mention it, yet it returned with equal savagery day after day. Finally after some months of pain I was admitted to a neurological ward for a sural nerve biopsy. I was not impressed by the skill of the junior surgeon undertaking the procedure so I was not surprised when the biopsy failed to show any significant abnormality. During my inpatient stay I asked the resident house officer if I could try gabapentin. The result was dramatic, I have remained free from pain ever since. Life that winter was complicated by the sodium losing nephropathy; on two separate occasions I lost 10 kg due to the associated water loss leading to dehydration, postural hypotension and vomiting. Eventually the excessive salt replacement put me into cardiac failure.

The relentless low-grade fever continued every evening for over 8 weeks resulting in full investigation for fever of unknown origin, but no cause was found. Recovery was further delayed by MRSA septicaemia resulting from the presumably unclean insertion of a central line for emergency haemodialysis. By early 2003 the renal failure was well managed by haemodialysis giving good biochemical control, but the CIDP progressively deteriorated: each week I lost a function that had been present the previous week. In addition to the bilateral ulnar neuropathy, both median and radial nerves were involved leaving just a little strength in abduction of my thumbs while the other muscles in my hands supplied by these three nerves were paralysed. There was complete sensory loss in a short glove distribution. My hands functioned like a pair of flippers, no grip was possible. Axonal damage had led to severe wasting of the small muscles in my hands.

I had to use a variety of practical aids for feeding and washing, my wife dressed me. I managed to move about indoors with a walking frame, I could attend Rotary lunches with help, but could no longer grip a card or use watch tools. There were still thirty partially completed repair jobs, and I shall be eternally grateful to the four watch repairers who completed those jobs for me.

Through 2003 prednisolone, azathioprine, intravenous immunoglobulin, plasma exchange, cyclosporin and mycophenolate were all tried; none of them arrested the relentless progression of the disease. The renal failure was well controlled by haemodialysis, the only limb muscles that continued to work were the upper arm muscles enabling me to use a powered wheel chair and to transfer with a sliding board. Social services turned up trumps, they supplied a powered hoist and carers every morning and evening to wash and dress me. A slotted strap round my hand held a spoon allowing me to transfer cut-up food to my mouth. The computer was now my lifeline, using the keyboard with one fatigued index finger became arduous; so I installed a voice-operated program which after perseverance became a very effective tool. A failing that seems to be widespread in the neurological field is the inability of some doctors to give adequate information and reference to other sources.

A common feeling experienced by myself and many others who have developed CIDP, is a sensation of utter isolation and loneliness; none of the seven medical partners in my general practice had heard of it, how do you explain it to friends? A search of the web brought me to two sites http://www.gbsfi/ .com and http://www.gbs.org.uk/ on which there are many expert patients and a wealth of knowledge. There are often medical, or anatomical queries so I log on every morning to do a ‘cyber surgery’. The voice operated program allowed me to continue in spite of almost complete quadriplegia. I raised a query about unexplained fever and have now had twelve replies from others in many parts of the world in whom fever of unknown origin occurred during the active phase of CIDP, many of them were also fully investigated for a cause of the fever, though none of their physicians associated it, as I do, with the active auto-immune destructive process. Realising that I had probably reached the nadir of my disease, I accepted that this was how the remainder of my life would be, one which in view of my family history and the renal failure was likely to be brought to a close by a myocardial infarct.

The major strain was on my wife as principal carer for most of the day and night, there is no official support to which a carer can turn. In a way, we were fortunate to have two friends also limited to wheel chairs; their partners were able to give somesupport and advice. Renal failure turned out to be a blessing; besides no longer having the inconvenience of passing urine from a quadriplegic body, 3 days away every week in the care of renal dialysis nurses relieved my wife of responsibility on those days. As in all chronic diseases, attitude is of prime importance. A cheerful face in adversity reflects on all who come into contact, so much so that people begin to seek contact. I was fortunate in being able to do the ‘cyber surgery’ each morning, giving me a purpose in life and the facility for helping others. After discussion with a neurologist more experienced in CIDP, the neurologist I was seeing suggested the use of Rituximab, an antibody against the CD20 antigen found on the surface of B cell lymphocytes.

Its use is established in B cell lymphoma and has shown promise in patients with the neuropathy associated with IgM paraproteinaemia. The possible adverse effects were fairly horrific, but I really had little to lose and no other options. I was started on intravenous infusions of 700 mg of Rituximab, which were repeated every 3 weeks until I had had seven doses. I could hardly believe the transformation. After the first dose I could partly flex my hand, a movement previously impossible as my hand had been paralysed. After 3 months muscle strength recovered in my legs, fatigue diminished and disappeared, the ataxia was less and the pain was reduced. I installed parallel bars and employed a neurologically trained physiotherapist. Six months after starting Rituximab I could walk with a frame, wash and dress myself and hold normal cutlery. Soon finger-thumb grip returned so that I could play cards. The crowning achievement was to walk my daughter down the aisle at her wedding.

ACKNOWLEDGEMENTS
I should like to acknowledge Prof. Richard Hughes and Dr. W.R.Gibb for their help and advice.

Feeling a little groggy this morning. I needed to take an Amitriptyln last night because of the pain in my feet and legs. They are really hurting this morning.

I’m up before 6.15am this morning. I haven’t done this in a long while. It’s just as well, I need to get used to getting up again. I plan to go back to full-time and I’ll need to be up about 6.15-6.30am anyway.

Was up and down going to the bathroom last night. I think it may because of the med’s. I’m not sure. I took them early yesterday morning and I was thinking they’d be out of my system by evening. Evidently not. I guess I need to get used to "running" again. My legs hurt worse this morning and it’s because of the Edema. It hurts just to bend my knees while sitting, which means the Edema is spreading up my legs and has now reached my thighs.

I have PT today and we are supposed to work on the lower body. With the way my legs are hurting, we may not be able to do a full workout today. We’ll see if not lower body, then we will try some new upper body workouts.