NEW MEMBERS AND CURRENT MEMBERS PLEASE HELP

[Little Lamb]

Jumpy,

Ya got a point there. My medical record is my business. So is the blood test. I do have the right to that knowledge.

[sardsy75]

Honestly, I reckon that my memory, or lack thereof these days is a direct result of the numerous drug experiments i've subjected myself to since June/July last year (2003).

Anyway, I thought of a few things that really should be quite important as part of the questionnaire ... particularly in the diagnosis and diagnostic processes undertaken and subjected to.

INITIAL DIAGNOSTIC TESTS UNDERTAKEN -JULY 2003
Blood Tests - unsure of what was tested, but I am about to start requesting a copy of all my medical records for this particular period of my life.
Chest X-Rays
MRI - Head
MRI - Neck & Upper Spinal Cord
MRI - Lower Spinal Cord
Blood Pressure
Physical Reactive Tests i.e. the ol' hammer on the knee/elbow & resulting "jerk" reaction

I found out later a few of the more serious things being "ruled out" were Multiple Sclerosis, Motor Neurone Disease, Stiff Person Disease, etc i.e. the heavy-weights of neurological problems.

Both my neuros have since mentioned that it is not unusual for MS to initially present with symptoms very similar to what i was/am experiencing (eek!)

FOLLOWUP DIAGNOSTIC TESTS UNDERTAKEN -JANUARY 2004
Blood Pressure - N.B. I was on a cocktail of Cabergoline and Levodopa/Benserazide at this time and it was wreaking havoc with my blood pressure.
Blood Tests - again uncertain as to what exactly was tested
Chest X-Rays - to check for pulmonary fibrosis as a result of prolonged usage of Cabergoline which had caused a persistant cough.
Full Lung Function Tests - see above

FOLLOWUP DIAGNOSTIC TESTS UNDERTAKEN - FEBRUARY 2004
Blood Pressure - refer below
Blood Tests - refer below
N.B. This was brought about due to my unexpected 2am visit to hospital with my blood pressure crashing through the floor and my temperature not far behind (getting down to 35.1 celcius; normal temp is usually 37.5 celcius); I was let out on good behavious after a few hours obs
February was also the time that I "retired" from Full-Time work.

FOLLOWUP DIAGNOSTIC TESTS UNDERTAKEN - APRIL 2004
Blood Tests - again will have to check med records

FOLLOWUP DIAGNOSTIC TESTS UNDERTAKEN - MAY 2004
Blood Tests - again will have to check med records

I feel that I should also add that my dear GP/GateKeeper (Lurv that term Jumpy!) Dr K, has been absolutely wonderful, willing to learn and willing to listen (particularly when his patient says she wants OFF the drugs that are making her hallucinate!)

I have been under the care of two Neurologists who are poles apart in not only the way they treat the patient (i.e. listening to the patient as against pretending to listen to the patient), but poles apart in the way they went about diagnosing. One Neuro looked at me as "a moment in time" the other looked at me as "a whole picture".

Ok, I've rattled on enough again - i'll shuddup for a while

[jumpyowl]

Thanks Nadia! I knew I could count on you.

[sardsy75]

I knew this would happen LOL

So much for me shudding up for a while.

FAMILY HISTORY!!!
Sister (2yrs younger) - Depression, Chronic Endometriosis (currently enduring a medically induced menopause)
Mother - CFS/ME, Fibromyalgia, RLS, Non-Existant Immune System (relies on 6 weekly injections of immuno/gamma-globulin)
Father - Healthy as a horse
Maternal Grandmother - Parkinsons Disease, Lungs are Pure Scar Tissue (opposite of emphysema don't know the med term), uncontrollable dry unproductive cough, two bouts of plurasy as a young woman
Maternal Grandfater (Passed 1997) - Prostate Cancer, Probable CFS/ME & RLS
Paternal Grandmother - Healthy as a horse until a couple of years ago; has since been going through a series of mini-strokes
Paternal Grandfather (Passed 2003) - Diabetes (passed as a result of complications of infections caused by the diabetes)

One Uncle and one Aunt on my Mothers side also suffer from RLS. At least three of my mother's aunt's & uncles also suffer from RLS to varying degrees, indicating that it "runs in the family". I am the first of all my cousins & other relations of my generation to get this, and I don't wish it on ANY of them!

[sardsy75]

Just a thought (and no, it did not hurt ), for those of us who have been on a myriad of different drugs and cocktails, is it worth listing the side-effects we experienced in each situation?

As RLS is such an "individual" syndrome, we have already seen that there is no one standard "formula" for relief.

Theoretically you could combine all our "formula diaries" into one big unofficial pharmaceutical research study; listing not only the drugs/cocktails tried, but for how long, what relief results were achieved, and last but not least, what side effects were experienced.

My hubby is an IT programmer and after seeing me labouriously typing everything into an MSExcel spreadsheet, set about writing a basic program in MSAccess complete with calendar, drop down boxes containing all my drugs, the dosages, times dosages were taken, rls rating scale for the day, appointments with gatekeeprs/neuros/craniosacral therapists etc, and a diary section for any other notes, like side effects.

Like i said, just thoughts... which may or may not be useful

(((((HUGS))))) to All

[Cathy]

ok here goes.......

age: 41
sex: female
location: west coast of Canada, on the ocean
other health problems:
hiatus hernia
gastric reflux
Scheurmann's disease (spinal kyphosis diagnosed age 19)
Migranes

RLS: diagnosed 3 weeks ago
mild symptoms during teens, resurfaced recently
attacks last 3-4 days, nights worse, symptoms lessen in the day
Up at night needing to walk or move
(haven't been aware of this long enough to notice anymore patterns..will add more as time goes on)
Much worse after long car rides

Family history:
Paternal grandmother disabled with Rheumatoid arthritis
Dad recognized symptoms now I have told him about RLS, his are mild

Meds:
Levocard 100mg/10mg at bedtime

for now this is me
I'm more than happy to keep you updated as I explore this weird and notsowonderful Syndrome

[Rubyslipper]

Guess it's about time I jumped on the wagon with everyone else. Hope my input is as coherent as everyone else's.

Age: 48, almost 49
Sex: Okay, you guessed it. Female
Location: Central part of Missouri
Diagnosed with RLS about 6 years ago after going through numerous tests for MS. Since it was something "unimportant" my doctor lost interest and I was on my own as to finding help. Went through 2 sleep studies where I didn't sleep much. Found that my oxygen levels went down to 85% during the tests. The doctor told me to lose weight and come back in 6 months. Went to a different doctor who has helped quite a bit. I had growing pains when I was young but they went away in my teens. Started the RLS symptoms about 30 years ago but they weren't too extreme until about 6 years ago. Steadily getting worse. On Mirapex and Neurontin at night with doctor's okay to take in a.m. if needed. Occasionally now have symptoms during the day. Was previously on Wellbutrin which worked great for me and may try to go back on it instead of the Neurontin. Also started taking heart medication recently for arrythmia. It's a beta blocker but so far hasn't caused me problems. OTC medications for colds or allergies will cause major symptoms. I know this is disjointed but it's all I have right now. Use it how you wish!

[becat]

n/a

[jan3213]

THIS IS JAN'S DO OVER (ADDITIONS JUNE 26, 2005)

Female
Age 57 (had a birthday since first bio--darn it!)
From Illinois

Jan originally wrote:

Jan3213
Age 56
Meds: 1mg 2x daily; Clonazepam 2mg. 1x daily; I was recently prescribed Vicodin 500 MG every 8 hrs as needed for pain
Have had RLS approx. 20 years
Self diagnosed
Symptoms include: creepy-crawly feeling in both legs and arms after I go to bed at night; hot feet; sometimes inability to sit through a movie, ride in a car (for more than approx. 1/2 hour), sit in a chair at home for more than approx. 15 minutes (approximation); the only relief I would get (before getting the right combination of medication) would be to walk (sometimes (I would walk all night).
Other medical problems: I have irritable bowel syndrome; depression (partly from RLS--partly inherited (my mother's family is prone to depression)
Recently (the last 2 months), my legs have begun to hurt like arthritis. I can hardly walk in the morning. On a scale of 1-10, they are about a 6 when I get up for about 1 1/2 hours. Then, they improve to about a 2. Sometimes, I get cramps.
I have insomnia occasionally.
I believe that's about it.

I would like to add the following:

Further medical history:
Blood type--O positive
Occasional migrains
Allergies (hayfever, sinus problems--seem to be getting better with age,
which is good because obviously have to stay away from allergy meds)
Had carpal tunnel surgery on both hands 3 years ago
Broke 5th metatarsal on left foot 3 years ago (ouch!)
Had gall bladder surgery June 2004

Possible family link to RLS. My father may have possibly had RLS. He is deceased, but I do remember him having problems with his legs. He died in 1979 and, of course, no one knew what RLS was then. I do not remember having growing pains; however, one of my daughters did have growing pains and two of my adult children have experienced symptoms of RLS.

I CANNOT SLEEP WITHOUT MEDS and panic if I think I will be without medication because I know what the night will be like!!! Even now, I'm noticing that I have to have my meds "juggled around" more frequently than I used to. Since I wrote my first bio, my pain scale is worse and a trip to my neuro is upcoming.

Thats it folks!

ADDITIONS APRIL 11, 2005

I was dxed with fibromyalgia in late October/early November, 2004. The pain and problems walking in the morning were symptoms of fibro. Since being dxed, I have had numerous problems. I have experienced numbness on the left side of my face, neck and arm several times. I have had several bad reactions to drugs, including Effexor and Paxil, both SSRIs. These were given to be, supposedly to help with pain; however, they are anti-depressants. With Effexor, I had panic attacks, my RLS was exacerbated to the point that my arms and my trunk were totally involved and I was shaking uncontrollably. I developed hives and had them for a period of at least seven weeks. Of course, I went off of Effexor immediately, but suffered from withdrawal, even though I went off of it gradually. Then, my neurologist put me on Paxil, which is in the same family of drugs. Same thing happened. I'm not going to the same neurologist anymore. My immune system is definitely compromised. I have had the stomach flu so badly that I became dehydrated and had to go to the ER after passing out. The I had a respiratory infection, and even though I had a series of two "Z-packs" of antibiotics, I couldn't "shake" it and coughed so much I fractured a rib on my right side. I have had a cough for at least 6 weeks. But, I'm going to be OK! My RLS seems to be under control at the moment. And, my fibro is, too. I also have chronic fatigue syndrome, but, frankly, I didn't get sleep anyway because of RLS, so who knows whether I'm tired because of RLS or CFS? I'm going to see a new neurologist this Thursday. I'll add to this if anything changes.

JUNE 26, 2005
How ironic that I said my on April 11, 2005 that my legs began to hurt like arthritis, because on June 23, 2005, I was diagnosed with Rheumatoid Arthritis. So, now I begin another journey. Each one seems to get more difficult. I'm afraid to say "I'll add to this if anything changes".

[nephriticus]

I’m male and 59. I acquired RLS February 13, 2002. Yes, I can pinpoint the onset at that date. I had no symptoms prior to then, and when the symptoms arrived they took up permanent residence. After about two weeks of this nonsense I went to a web browser late one night and typed in “+jumpy +legs” and, whoa, I immediately found RLS.ORG. I thought, “There’s others? With worse sypmtoms? Dang!”

Armed with knowledge, I consulted my general practitioner who is cognizant of the affliction. I have been taking Sinemet (carbidopa/levidopa, 10/100) since March 2002. It has worked well for the most part. As remarked on another post, when Sinemet fails me I elevate my respiration significantly with brief exercise which seems to “burn out” the symptoms and permits sleep. I have not yet concluded whether elevated respiration without the Sinemet is effective. At this time I do seem to be developing rebound from the Sinemet, though it currently is not preventing sleep.

I am a shift worker with very erratic schedules. At first, if on a night shift for several consecutive days, it would take three to four days for the RLS to conform to the new sleep schedule. I would not require the Sinemet until then. Apparently the RLS has educated itself and made the statement “You mess with me and I’ll mess with you.” I now require the Sinemet the first sleep period of a shift change.

My other deficits include a congenitally defective “swaller pipe” (Snuffy Smith), aka esophagus. I self dilate my esophagus with a 46 French bougie every four days to sustain the diameter. Additionally, I have a minor spinal cord deficit with some loss of feeling in one leg and have experienced ample quantities of generalized leg pain for the last thirty years. Had I not acquired coping skills from a pain clinic I likely would have resorted to substance abuse years ago.

Because of my lower back deficit, I am compelled to sleep on my back on a 2” foam-padded sheet of ¾” plywood. I have performed back strengthening exercises and other aerobic exercises for the last twenty-five years. Other than that already mentioned, I enjoy good health and am fairly fit. I work full time and serve as caregiver to my wife and adult son. My wife is physically debilitated by myotonic muscular dystrophy and my developmentally disabled son is in the initial stages of physical debilitation from the same disease. I find respite from the demands upon my time by reserving several hours a week carving nephritic jade (hence, nephriticus).

[jumpyowl]

interesting bio nephriticus!

Unique in mentioning the increase in respiratory rate to eliminate paresthesia.

Have you and your care giver considered Mirapex or Requip instead of Sinemet? Those appear to have more trouble-free beneficial effects.

[Pat Autin-Wilson]

Age 60
encephalitis at age 5-comatose for 8 days
Onselt of RLS-Unknown but thought to be after the Encepahlitis.
R front lobal brain atrophy as result of the Encephalitis.
No remarkaable medical history after the E.
Gallbladder removal, Hysterectomay, Severe Migrain headaches-none now. Broken bone throughout history.


RLS medicaiton-Mirapex. Dc'd by doctor and given Sinemet. RLS became worse. DC'd Sinemet and now on Requip.

Daignosis:
osteo Penia-calcium and Fosmax
Clariton for Allergy
Viox for shoulder bursitis.
Requip .50 mg at night. To work up to .75mg dosage.

[jumpyowl]

Even as a small child you were tough! Good genes!

Thanks for the bio, which was really a prelude for the Questionnaire.

Becat was the first to e-mail it in! She should get a medal!

Thanks to you all!

[becat]

bump

[Sara]

Hooray! I'm not as dumb as I look! I FINALLY figured out what "bump" means! LOLOL

This one needs to stay close to the top, so we can all refer to the bios (and add some more? I promise I'll try to take time to add a brief one in the next day or two, too.)

Connie, if you read this... this is the post I meant... got the name wrong. Oh, well.

Sara