Those of us hanging out in the lower sphere are heading deeply into winter as our friends away up north laugh while the sun is giving them a blast. Its quite OK people, your turn will come again. Mind you I read on tele of many experiencing all sorts of utter chaos be it flooding or other acts of God.
We are honored that we are living in a time when more is being learned about Superficial Siderosis than during the whole past 104 years since the Chicago Neurological Society first brought it to attention of the world. Possibly we are also living in the time that the most known number of sufferers exist at any one time on the planet as well. Without question there is more interest from the medical world than ever before and one wonders what else will be learned and passed on during the next decade. Remember a sufferer can help enormously with passed on accurate description of the symptoms.
This doesn’t mean we should sit on our hands and count the number of stars at night, but rather we should never turn down an opportunity to educate anybody prepared to listen to us.
Yes again, as if we needed it. This time its hello and welcome to Leonie in Adelaide. Leonie was diagnosed with SS just a year ago but is having extreme trouble to get some medical person to take an interest in her as by all accounts she has an unbelievable ailment. Leoni, you are not a lone ranger on this sad and un-necessary position. At least someone had the sense to order an MRI when the hearing in her right ear took a sudden dive resulting in a accurate diagnosis.
When Leonie did get to seeing a neurologist they then went into Google to see what the hang the radiologist was talking about while Leonie sat and studied fly marks on the wall.
As I was telling her she has the honor of being the 8th Australian SS diagnosed person we know about and number two female. What an honor !!
Yes, another of those real medical names of side effects related things. I see my Oxford dictionary says that oscillate may mean fluctuate, vibrate, waver, see-saw, swing, sway, vacillate, equivocate, shilly-shally, hum and haw. Get the picture !! Yes, just another description for how our eyes may retaliate when that thing inside the head called a vestibular is not doing the job it was designed to do.
Give a thought for poor Don of Missouri who is in Nursing Facility and some silly staff member poured Don’s hot coffee over him and he needed a skin graft in his groin area. Don’s food is being pureed nowadays. During the daytime Don sleeps much in his recliner. His wife Ginger really struggles to hear him as he mumbles considerably and his voice is very low. Don’s dementia gets worse by the day.
Thank goodness Don has an excellent family who regularly visit him including darling grand children.
James of Carolina is getting his Ferriprox from up in Canada. Wife Linda says you need a doctor to write out a script. James can’t get it via insurance so they have to pay and this way its much more reasonable.
Jeff of Virginia has applied five times to his insurer for Ferriprox and unfortunately has been turned down each time has asked me to prepare a document on the drug and more especially the success it has had. Good luck Jeff for next week’s re-try.
Captain Bob has just been to a Mayo Clinic and in 6 month’s time is getting a comprehensive check over. Meantime Captain Bob plods along as best he can.
Carolyn of London
Great to hear from Carolyn. She has been experiencing failure of the legs and pain so was attending a physio but she was certain it wasn’t helping, rather adding to to troubles. I hope my ‘essay’ was of help Carolyn. Stick to watching tele and seeing what Queen Elizabeth is up to in her Diamond Jubilee celebrations.
Michael of Ireland
Michael is currently in Bergen, Norway. I can only assume he is representing the Irish Hearing Association at a Conference. You poor thing you !!
“Hanging on by my toenails”
Gosh, this email heading caught my eyes. It was from Eva in Tennessee and reports how she has just entered her 4th month of gulping Ferriprox with no differences yet obvious. Eva’s husband George works night shift and currently Eva is not coping by herself all that well. Eva, my dear, we are thinking of you and yes SS has the ability to make the brain insecure so we hope you get yourself back on track ASAP.
Dave of Australia is one to mention seizures and aura and since the last newsletter Dave started getting them at an alarming 120 second intervals. Thankfully his daughter Jennie whisked him off to the doctors flat stick who injected him straight away and put him on medication which helps although makes it him very groggy. Dave is thrilled to bits that in 14 days he has no repeat attacks.
Dave comments “The one thing for sure is that the more symptoms that I encounter, the more genuine empathy that I have for other fellow sufferers. ”
Sadly for him, Jennie shortly takes up an appointment in New Delhi which will last for 3 years so he’ll need to set-up another support link for future hiccups.
We wish you well Dave as you seek a replacement for your dear darling daughter.
Of late the term ‘aura’ has been thrown around considerably by members. It is certainly ‘very SS’ as it is in conjunction with migraines or seizures. This is something I’ve been very aware of since I first getting migraines 53 years ago now. My parents must have paid out thousands of hard earned money trying to help me. They got the darkest possible sun glasses ( yes- adult size ) and had me to the doctor so often I reckon mom and dad owned his consultation rooms ! Plus in those days the doc would go home visits and he seemed to be forever at our place.
So as to be certain of meanings I went into Wikipedia for their description of the word. It says:
“An aura is a perceptual disturbance experienced by some, but not all, migraine sufferers before a migraine and sometimes during a migraine. It often manifests as the perception of a strange light, an unpleasant smell or confusing thoughts or experiences. Some people have silent migraines which doesn’t actually include the migraine or a seizure.” I’ve also had them in the past.
The beauty of auras is it allows the sufferer time to not injure themselves, or others. The time frame may be just a few seconds and up to an hour. If it lasts an hour it has the ability to leave the person very confused and disorientated. Most people who have auras have the exact same type each time. I can drink to that !
Auras can also be confused with the sudden onset of panic or anxiety creating difficulty in correct diagnosis.
An aura sensation can include some or a combination of the following :
• Bright lights and blobs
• Zigzag lines
• Distortions in the size or shape of objects
• Vibrating visual field
• Scintillating scotoma
◦ Shimmering, pulsating patches, often curved
◦ Tunnel vision
◦ Blind or dark spots in the field of vision
◦ Curtain-like effect over one eye
◦ Slowly spreading spots
• Kaleidoscope effects on visual field
• Total temporary monocular (in one eye) blindness (in retinal migraine)
• Heightened sensitivity to light
• Hearing voices or sounds that do not exist: true auditory hallucinations
• Modification of voices or sounds in the environment: buzzing, tremolo, amplitude modulation or other modulations
• Heightened sensitivity to hearing
• Someone speaking at a level and normal tone sounds like they are shouting loudly
• Strange smells (Phantosmia) or tastes (Gustatory hallucinations), or where food and drinks taste different than usual
• Heightened sensitivity to smell
• Feelings of déjà vu or confusion
• Feelings of numbness or tingling on one side of the face or body
• Feeling separated from one’s body
• Feeling as if the limbs are moving independently from the body
• Feeling as if one or multiple limbs are growing
• Feeling as if the mouth is too small for the teeth inside
• Feeling as if one has to eat or go to the bathroom
• Feeling as if one is going to vomit
• Feeling as if you are getting warmer or overheating
• Sudden Perspiration
• Anxiety or fear
• Weakness, unsteadiness
• Saliva collecting in the mouth
• Being unable to understand or comprehend spoken words during and after the aura
• Being unable to speak properly, such as slurred speech or gibberish, despite the brain grasping what the person is trying to verbalize (aphasia)
• Temporary amnesia, such as forgetting how to do tasks you have been doing for years.
I hope this information is of interest to those of you who do experience auras with their migraines. My migraines of earlier pre-SS years were extremely draining especially for a 7 year old child. Oddly enough they first developed when my oldest sister and her husband won the rights to establish a pharmacy is a hydro township the government set up about 70 miles inland from my home town. In those days it was a very dry uninteresting area and the migraines would usually start up in the auto while going up the river valley to visit them. It wasn’t long before I knew I had to force myself to vomit and have a bare minimum of 3 hours sleep in a very dark quiet room. Sometimes this meant having a towel placed over my eyes to guarantee darkness.
Later on if they occurred while I was carrying out employment such as a milk vendor with a starting time of 1.30 am I found I simply had to carry out my duties and boxed on as best I could. Someone seeing me must have wondered what this half-wit was doing wearing sunnies at 3 o’clock in the morning !! Thankfully the SS migraines are ‘just’ acceptable and 99/100 I carry on at whatever I’m doing but as I’ve said in the past New Zealand Manuka Honey with a minimum of Active 5 Plus plus two strong pain killers will eliminate the migraine quickly. Actually I had one earlier this week and it was 16 minutes after taking the Honey and Panadol that I was Ok again. Just a bit drained. As I’ve previously said the maoris, our indigenous population. were well aware of the medicinal values of Manuka as far back as early 1800’s. In early European days the sailors found out that Manuka was an excellent replacement for making cups of tea hence it earned the name ‘tree tree’. One has to be extraordinarily careful that the honey is in fact Active Plus. A Great Britain avairy was taken before the courts for incorrectly claiming their’s was the fancy article.
If you get bad auras I really feel for you.
This is so close to the word aurora which living so far south we see from time to time, and I’m sure some of you see the ‘northern aurora’ as well. I remember as a kid being dragged outside to gaze at the sky. If we were at our holiday house I might be dragged out of bed even. Unusually lights, often green in color, would light up the whole heavens but to add real confusion to a kid they were most unusually shaped. It was very hard to imagine how come the sun never set at night and that it could do such amazing phenomena. Just another of life’s doings.
I have recommended Lyrica for the SS pain several times and still think it’s a miracle. My legs and back start to let me know when it’s wearing off. Standing to cook and keep house is a constant pain, but less so with the Lyrica. It is expensive and causes weight gain, but I guess that’s to be expected. Seems like everything has a down side!
I bought a stool through a catalog — they have it online too — called Golden Violin that has the seat slanted so you aren’t really sitting, but leaning on it. It really works for some of the cooking and is great for ironing. The catalogue contains a lot of things that look like they would help with life.
Martha of Virginia: I was on Ferriprox for 3 months, but had to stop temporarily because I developed bronchitis, a sore throat, sinus infection, and laryngitis. Tho my situation has improved, unfortunately the laryngitis and a minor cough have continued so I’m not yet back on Ferriprox. It now turns out that my laryngitis and cough may be related to a new blood pressure medication, so that’s been changed. And, also, of all things, I may have developed kennel cough at the same time. Yep, humans CAN get it. Seems that around the time I got sick, I had a cat at the vet that was exposed to a dog with kennel cough. When the cat was brought home, he began showing signs of kennel cough and infected the other cats at home, and soon I had 3 cats on oxygen at the vet’s office. When it rains, it pours! I hope to go back on Ferriprox when I’m “cured” of my ordinary problems. Dr. Levy has suggested I cut back to 1,000mg of Ferriprox per day because of my exhaustion.
Mike of New Jersey: I purchase my Ferriprox from Canadadrugs, but it’s shipped from the Netherlands. I pay $360 per 100 tablets. My total monthly cost is $432. I take four 500mg tablets per day.
Annie of Ohio: I am not taking Ferriprox right now, but that is something I will be discussing with Dr. Levy when I see him July 6. Currently, I am taking Vitamins C, E, and D plus calcium.
If anyone out there has a remedy for loud tinnitus, I’m all ears (no pun intended).
I want to make it known to all of the SSers to beware of taking kelp — after a visit to the ER last month, with my husband and daughter thinking I had a slight stroke. Well, they treated me for anxiety in the ER and sent me home nearly 4 hours later, making me feel pretty stupid for going there. My husband spoke with my family doctor the next day, and he decided to run a blood test and a 24-hour urine test for a heavy metals screening (which was sent to Mayo Clinic) to check for mercury in my system. The results came back that I had an extremely high amount of arsenic in my system. The acceptable amount is 0-35, and my number was a whopping 419! No wonder I felt so bad, so dizzy and stuttering. Well, needless to say, I am not taking the kelp supplement anymore, as my husband went on-line and found out that the University of CA did a study of 9 different kelp supplements, and 8 of them came back with a high amount of arsenic in them. It has now been 5 weeks since I have had that poison in my body, and I am feeling better and am hardly stuttering at all.
I have seen my neurologists again since then, and they didn’t seem alarmed at all about the arsenic, just puzzled. My husband and I just don’t know what to make of that neurological group. I am a puzzle to them, and we don’t feel they’re interested in learning how to help me. Like the hospital, they, too, want to throw me on this med and that med, and write down that I was seen for anxiety. I am soooooo glad to be seeing Dr Levy next week.
Thomas of Georgia: I have multiple medical problems, in addition to SS, and take, on average, some 30 or more pills per day.
As for Ferriprox, my neurologist doesn’t like the side effects that Ferriprox can cause. He is watching me for more bleeding because I am showing more hemosiderin deposits on the spine. I see my neurologist on the 27th for more information.
Roy of Massachusetts: I am not taking Ferriprox. This can not cure the disease, and I feel that, at this time, I would not want to stay in the body I have now for any extended period of time.
Since I recently flunked a swallow test, I was told that I needed to thicken my liquids. I guess I would like to know if this has happened to anyone else. I aspirate when I swallow liquid, but I am doing better now that my liquids are being thickened.
Jeff of Virginia: I am not taking Ferriprox. My insurance would not approve it. It went through five appeals.
Has anyone purchased Ferriprox from Canadadrugs.com? I’m thinking of giving that a try, but it is kind of scary because I am not sure if it is real or not.
I have been having some severe pain in my head and face. I was prescribed Gabapentin. It took care of the pain, but I had to quit because it was taking all my energy. I had a really hard time getting off it, and I’m hoping to start taking Lyrica soon. That is currently in the appeals process with my insurance. It seems my insurance wants to fight everything because there is no evidence of anything helping SS.
Nick of Washington State: Thanks for setting up the US siderosis email. I tried everything to get my insurance to pay for Ferriprox, but to no avail. In desperation, I looked online and found it at CanadaDrug for $350.00 per 100 tablets. I have been ordering it through Canadadrug for the last 3 months. They are very efficient and always inform me about the shipments. I highly recommend them (note: they ship Ferriprox out of the UK, so it takes about 10 days). My dosage is 4 tablets or 2000 mg per day / five days a week.
I have been cutting back on heme (red meat), fortified iron foods, and vitamin C during the week, and stocking up on red meat during the weekend. I don’t know if it makes sense.
My blood test is on Mondays, and my white blood count started at 7, but is now between 4.4 and 5.5 K/uL. (The standard range minimum is 4.)
I have had no major problem taking the Ferriprox and now take it with yogurt and occasionally with meals. I have read that taking it without meals increases the peak concentration; but again I don’t know if it makes sense. I am actually looking forward to the MRI. Mine will be at the end of September (I only started in April), and hopefully I’ll see less hemosiderin.
Brad of Indiana: I had been using the Rush Institute, the hospital that diagnosed my SS. Unfortunately, they seem to be more worried about money and notoriety than being helpful. They aren’t willing to work with siderosis doctors. They had put me on Busiprone and Amantadine (antidepressants) for my dizziness/ataxia, but the drugs really didn’t work. When I advised them that I no longer wanted to take the drugs because they weren’t working (I slept nearly nonstop and when I got up I felt worse), they were defensive. So I didn’t want to continue with them, and they just sent me off to find another doctor.
I get my Ferriprox direct from the Missouri pharmacy; they FedEx it every month. It costs $51 per month. I’ve been on the same dosage since I started, 2 pills each morning and night, 500mg each pill.
Per Dr. Levy, I tried Provigel, which ended up helping to an extent but also kept me up half the night, and I couldn’t sleep normally. So I no longer take anything but Ferriprox.
Rose: I have a radiological finding of SS, but not a d/x of SS from an s/x standpoint. I need to have further imaging done, but even then I may be in limbo insofar as the doctors stating that I am actively suffering from the effects of SS. I have been in contact with Dr. Levy who was not certain of the MRI finding, but his colleague believed the MRI showed some SS. It is a long story why I am in diagnostic limbo. But, I understand from Dave that there are others like me.
Pam of Michigan: I am not taking Ferriprox because my doctor at the University of Michigan is not comfortable due to not much being known about the drug, plus the every 7-10 day blood draw, and also his conversation with Dr. Kumar at Mayo Clinic. So I do not take any drugs for my SS
Eileen of Canada: I am not portico[atomg in the drug trial. I live in Canada.
James of North Carolina: I get my Ferriprox from Canada for $350.00 for 100 tablets. I take 2000 mg a day. But I have had an infection and have only taken it 3 days so far. The address for the pharmacy is canadadrugs.com. I hope this helps someone.
Going into oblivion
This is to be the last regular monthly newsletter for a number of reasons which I won’t go into. The number of people who show appreciation to boost my interests and who even maintain contact is getting very limited and I figure my own health and sanity is much too important than spending hours researching and writing. Bonnie and Martha are finding out how hard going this regular newsletter system is. One wonders how many SS members have in fact departed this world, as in some cases I haven’t heard from them in half a decade. I’ll maintain the group set-up though and produce a newsletter from time to time. Even this month I’ve had to create reasonably lengthy explanations for a few members unsure of what is happening to them plus to pass on to insurance companies, doctors, etc. This is extremely important to continue doing for the mental approach and well-being of fellow members. There is so much non understanding of SS in the membership but as time progresses I hope you all obtain an excellent understanding.
It seems so mean to do this after all the trouble that Bonnie and Martha have gone to to provide an easy channel for you North Americans to pass on information but I’m practicing what I preach and being very selfish. So in the future it may be bi-monthly or even tri-monthly. I’ll see how I go.
Currently one task for me is to alter my little bedroom as I’m going to have to sleep sitting up in an electrically operated recliner chair. Our best brand is called ‘Lazy-Boy.’ They do go down to almost flat so it will be trial and error to get the right acceptable angle.
And a giggle from the neighbour of a new member. It looks very american to me.
Some true wisdom.
Subject: With Age Comes Wisdom!!
A guy is 72 years old and loves to fish.
He was sitting in his boat the other day when he heard a voice say, ‘Pick me up.’
He looked around and couldn’t see anyone.
He thought he was dreaming when he heard the voice say again, ‘Pick me up.’
He looked in the water and there, floating on the top, was a frog.
The man said, ‘Are you talking to me?’
The frog said, ‘Yes, I’m talking to you.’ Pick me up, then kiss me; and I’ll turn into the most beautiful woman you have ever seen. I’ll make sure that all your friends are envious and jealous, because I will be your bride!’
The man looked at the frog for a short time, reached over, picked it up carefully and placed it in his shirt pocket.
The frog said, ‘What, are you nuts? Didn’t you hear what I said?’ I said, ‘Kiss me, and I will be your beautiful bride.’
He opened his pocket, looked at the frog and said, ‘Nah. At my age, I’d rather have a talking frog.’
With age comes wisdom.