Self-diagnosed

[jan3213]

Hi, Jumpy, it's Jan

Maybe it's me, but, just in case, the quote was from a post I was answering in another thread called: Is There Anyone Like Me in a conversation between Jumpy and Elfrieda where Jumpy said the following:

I am wondering (just ignorance on my part) what does a neurologist do? Their main job could not be treating RLS patients

I just thought I'd clear that up because I didn't see where anything was mentioned about a neurologist anywhere in this thread. The rest of it was concerning Jumpy's health, which I am VERY concerned about. He's a friend of mine, and I'm afraid he's not taking very good care of himself because he's doing so much for all of us!!! Jumpy, you know I always over explain everything, but just chalk it up to another "Jan" thing, okay? Ha!!!!!!!!! TAKE CARE OF YOU!!! (as Nadia says) And, have a good day, okay?

Jan

[jumpyowl]

>>>>>>>>>>>>>ATTENTION!!!<<<<<<<<<<<<<


>>>>>>>>>>TO MEMBERS, REGULAR VISITORS, AND<<<<<<<<<<
>>>>>>>>>>>>ANYONE WHO SUFFERS WITH RLS<<<<<<<<<<<<


For our research projects we desperately need more questionnaires completed.

For obtaining one, please e-mail me! I will promptly send one to you. After completion, please return it by e-mail!

At present we have received 34 completed and need at least 50!

THANK YOU IN ADVANCE!!!

[jumpyowl]

In the last few days I ran out of Ultram. So I switched back for two day to Hydrocodone (10/325). I certainly sleep better but the pain type also changed. So the phenomenon I observed before is reproducible.

There is (for me) a indigenous relationship between pain with RLS and codein derivatives.

Now I am back on Ultram and wide awake at 12 am. I have a bunch of 300 mg Neurontin capsule but I am not ready to start on them again.

[jumpyowl]

but I noticeably sleep less. This morning I got up at around 5. By 6-7 I started to get paresthesias where one's lower legs also feel heat. I will stay away from Hydrocodone, though.

So my daily medication is:

morning: 0.5 mg Mirapex and 50 mg of Ultram

evening: 0.5 mg Mirapex and 50 mg of Ultram

Nothing ever goes smoothly. The original prescription was for 100 (heavens know why), so they only gave me 40 for the refill instead of 60. Even if I can get the prescription, this month the insurance will not pay for it. Luckily, there is the generic version out there for half the price.

[jumpyowl]

Recently I posted:

I will stay away from Hydrocodone, though.

So my daily medication is:

morning: 0.5 mg Mirapex and 50 mg of Ultram

evening: 0.5 mg Mirapex and 50 mg of Ultram

In the meantime I had an almost sleepless night which is rare for me because I usually manage to get some sleep by hook or crook. Yes I had some paresthesia again even though it was supressed somewhat.

I had to go back to hydrocodone 10 mg/325. taking it on two occasions. Then one tablet of klonopin 1 mg. I was under some stress and I am sure that all these were related.

OTHER:

I had an occasion to chat with an endocrinologist of international reputation yesterday. She is the authoress of several books written to female patients. She was surprisingly well informed on RLS and I found some reference to it in one of her latest books.

I showed her the introduction part to the talk I am working on and she was quite supportive!

I am back on my normal medication (see above) and it is working again.

And the questionnaires are trickling in...

[jumpyowl]

I am still on Mirapex and Ultram. The problem will be to get re-fills. The two specialists, sleep doc (Dr. J) and the pain doc (Dr. R) are gently trying to get rid of me. I am sure I am seen as a problem patient. Appearing to know some about the affliction seems to be a disadvantage. It also appears that somehow they do not want to work with me to solve this problem (I would welcome a patient like that). Clearly they are not research-oriented (cannot afford to be).

Perhaps I make them feel inadequate to treat such a mysterious affliction. BUt this is the point I try to make, unsuccessfully, nobody is adequate, so we should join forces. I am not really a trouble maker but I keenly need the co-operation of someone authorized to write prescriptions. And also provide medical insights and knowledge where I sorely need help.

Generating hostility clearly is not the way to go. So I decided to be lower key and also look at things from the physician's point of view. Clearly, it is also hard for them and often they are (with the insurance companies, the AMA, the HMO's and other managed care) between the rock and the hard place.

Well, I am willing cooperate and take the whole picture into consideration.

I am going to see a lady neurologist on Oct. 13, and hope for the best (no, I am not superstitious) . It is probably a coincidence but both doctors wanted to send me to the same office where there is a male and a female neurologist. Dr. R.'s choice was the lady doctor and Dr. J.'s was the gentleman. Que' sera', sera'.

So for the time being, and as long as the supplies last, my regimen is:


morning (late morning) : 0.5 mg Mirapex and 50 mg of Ultram

evening (shortly before retiring): 0.5 mg Mirapex and 50 mg of Ultram

An occasional hydrocodone if badly needed. The emphasis is on the occasional, the time is usually late at night.

Symptoms: Some pain, some subdued paresthesia.

[jumpyowl]

I have not posted here for a few days but now an update is needed.

My brother return from Europe and brought back a Dietary Supplement called Magnesium + B6. The tablet contains 250 mg MgCitrate and MgO and 1.6 mg of vitamin B6 (pyridoxine HCl). It appears that people are taking this supplement for RLS and anecdotal evidence indicated that it is effective.

The indications on the insert did not mention RLS. It is suggested for supplementing magnesium in case of defficiency due to diet, pregnancy, intense sport activity, or digestive problems including poor intestinal absorption. It is also useful for cardia arrythmia, hypertension, coronary problems.

Dosage suggested is 1 tablet per day.

In one or two days I observed some narcolepsy while working at the computer combined with some hallucinations. It appeared that I was taking too high dose of Mirapex and possibly Ultram. Possibly due to the helpful effects of the supplement.

To test that possibility I halved the dosage of both. Now I have been on

0.25 mg Mirapex

25 mg of Ultram

twice daily for the past two days .

As expected some perasthesia and pain returned, especially when I stopped the Magnesium and B6 supplement for a day. Now at 3 in the morning I started to take Mg+B6 again.

I also started a diary that includes medication taken dose and time, also symptoms, and the hours slept. Using a 24 hour schedule based on the military time.

[jumpyowl]

Now I have a small dilemma. Should I start a new thread on the pharmaceutical forum or continue this initial thread???

What has brought this on? I went to see a neurologist yesterday. She was tall, slender, attractive, had a quick and sharp mind, and had a lot of experience with RLS. But boy, she was tough! But I immediately realized that she is the kind of doctor I needed and was looking for (with not much hope).

HALLELUJA! So perhaps I shoud change venue and make the thread stop growing?

Just to refresh things:

I went to my gate keeper first. He tried (hydrocodone) but then he sent me to a sleep center led by a pulmonologist (clearly focusing on apnea, which is now quite fashionable and number one concern, next to diabetes). Being a pulmonologist specializing in respiratory problems, clearly he adopted a strict policy against any opiate. (Neurontin, then Mirapex). So my third stop was a pain doctor (Ultram). However, I sensed that all three doctors were uneasy and wanted to pass me on to someone else who could take charge of all the medications and knows more of the disease.

So I was sent to the neurologist by both #2 and #3.

Hallelujah!

She examined me and some of it it felt like a sobriety test. Then she asked me to squeeze her hand. - Is this all you can do? - she queried.
-Well, I do not want to hurt you! - I replied. [Well, she did look fragile being underweight next to my 50 pound overweight! ]

Finally, we agreed that she will cooperate with me under some rules which I found not only agreeable but a good idea.

She also asked me that if I find some good stuff in my searches to share it with her. I then asked her whether she would like to see my presentation in Ca in November. Her eyes got big but I did not press the point.

As she thinks (and found in her experience) that usually one drug controls RLS (she did not like Ultram for pain associated with RLS). Apparently she has never heard of Refractory RLS. So the algorithm paper (and the abstract) will be the first thing I will share with her.

For the first time I felt good about the doctor qualified to treat my RLS and we do complement each other in many ways. This does not mean a rosy relationship but a fruitful one. And she can take it as well as dish it out!

There was a humorous moment and she almost chuckled! I complemented her on her shoes and later she complimented me on my shirt. It was full of fishes. I told her that it was just given me as a gift from my wife and this is the first time I am wearing it. Then she stepped up to me and peeled a label off my shirt. "Well one thing she did not do, she did not remove this label." My reply: "she was not home when I got dressed and left!" All true!!! Then I think I heard a subdued chuckle.

(She must have heard the absent minded professor jokes)

If anyone has an opinion on my first query, please do not hesitate to let me know.

If you need privacy, please use my yahoo address: fjholly@yahoo.com

[Heronak]

Most excellent, finding a neuro you can work with (and teach!). I'm happy for you, Jumpy.

Regarding a new thread, YES, PLEASE! For me it would be nice to see threads that relate to specific people titled so they're easily identifiable (Heron's Story, whatever), and hopefully the responses would stay relevant to the person's story.

That's just the way my mind works, I can deal with however folks post. All the best,

Heron

[jumpyowl]

Thanks for the input. My thread started to be like what you described. But there are other responses. The reason I wanted to start a new one are two-fold.

1/ it is already too long to find something in it.
2/ I should get out of that forum as I feel like a veteran and not a newbie any more.

So I will! Well ,I will probably learn more from her but there are clearly things I know that she does not. (she did not do a survey and probably has no time to keep up with progress in this field.) She is skeptical but has a cold precise mind which will help me to get my intuitive knowledge in a scatter brain organized.

How did you like the idea of making this survey a continuous thing?

Since I would not want people to keep providing the same info all over, no questions (except the code number) will be repeated. It will just continue like an amendment. I will definitely be able to write a new one once I finish the evaluation of the second one. Forst on-linre. And only people who fill out the first one will be able to on to the second one (they will know their code #).

New info comes up all the time. And fast. Will probably can make it an on-going thing which will keep growing in numbers of participants.

[jan3213]

Jumpy and Heron!

I'm butting in AGAIN!!! Just saw your posts regarding the new questionnaire possibly becomming an ongoing survey. For what MY opinion's worth, I think that's an excellent idea. As each member on this forum becomes more willing to share his or her personal experiences with others, the more we find out how similar some of our symptoms are. We are our own "guinea pigs", so to speak. I think it's really exciting! Just thought, ONCE AGAIN, I'd add my $5.00 worth. The price goes up each time, you know. Ha!!!

Jan

[jumpyowl]

I am still in this old long thread. Interesting changes are taking place and am learning by the minute. BUT... I am so busy trying to tie things together... and the wedding is tomorrow..!! (meaning the National Meeting is a few days away).. Please stand by! I shall return or will "die" trying!

[lyndarae]

Jumpy, I know how busy you must be but I just wanted to tell you I MISS YOU!!!!!! Keep up the good work. GODS SPEED!!!!! ~~~~~~~~~~~~~Lyndarae

[jumpyowl]

It has meant a lot to me!!

[jumpyowl]

Thank you for the nice words!

I think I will continue my saga here so everyone can learn.

I was gradually getting into a bad shape, I think it was Becat who noticed it before I did. But I braved it out until my birthday. All those kinds words really helped.

Then on the evening of my 70th, it really hit me. Early next morning I hit the road and visited my son. While there I went to see a psychiatrist I knew (not as a patient).

Much to my surprise he diagnosed me with major depression and immediately notified my gatekeeper as well the neurologist whom I saw once. She is Dr. G.

Two days later I had a phone call from her office that she made an appointment for me. Since I sent her some material of the national meeting (and my talk) previously, there are two possibilities:

a/ she wants to discuss the material on RLS

b/ or she is reacting to the report from the psychiatrist.

My actual appoinment with her is still two months away BTW.

Well, my appointment is tomorrow at 10 o'clock. I am curious to find out what she will have to say to me. If anyone is interested, I will continue...

One thing I should add that now I am on Remeron. I mentioned to him the fact that antidepressants do not mix with dopamine agonists but he said that Remeron is not really a dopamine antagonist, and Wellbutrin would not be good for me because it tends to make people hyper and I am already hyper enough.

Nothing like personal experience to learn more about antidepressant against which I was sowehat prejudiced.

Lyndarae: I found a fascinating article on a British website entitled:

The Responsible Parent's guide to Healthy Mood-Boosters for all the Family.

You can find it at www.biopsychiatry.com

(((hugs)))