[sallyb]

Have been sick lately...sorry I have taken so long to update on the tests. The doc says that all of my tests say that I have MS except for one antibody test. One of them tested positive, and one of them tested negative though. The lumbar puncture, blood tests, and everything else tested positive for MS. On the 2nd, I go to the eye doc. My vision is playing some hardy games, and scaring me. On the 8th, I go back for another MRI on my neck. Something scary is going on there too. If I lay flat, I come up drunk for at least 20 minutes, walking into walls, and if I turn my head wrong, I get the headaches that last 2 to 3 weeks. I don't have any Idea if my neck has anything to do with MS. Anyway, on the 11th, I go back to the neuro to find out more.

I am thoroughly confused at this point. I can't sit and read the screen to learn about MS, and I am out of printing fluid. So, I don't even know what questions to ask the doc. I guess he will tell me which type I have. All I know is that when I went to him the other day, I felt eerie...as if he was keeping a few things to himself. All of a sudden, the doc and his staff acted as if they were wearing kid gloves, and I was fragile. And...I believe it was an accident when I saw the doc having a meeting with my other docs. I was not included, but they each came out and made it a point to speak to me. Sound paranoid don't I????

Anyway, I don't have much more to express at this point except for confusion.

sally

[Mariel]

Hoping for a clear picture to emerge. For you not to be frightened. For help to come. For healing to come.

The more I go online, and the more I learn, I see things in common between several different diseases.

I just got over vertigo which was caused by improper dental anesthesia. It lasted months. But I think it's gone. This is my second bout with severe vertigo, and it went before. So I hope yours will also go.

I now have peripheral neuropathy in the feet and am working on fixing that, studying myoproliferative disease with a new online group. High platelets in the blood. This is in addition to my other dx's....I'm just in the early stage of high platelets, but time to study up.

My point is that we often get a number of different things happening. It may not be all MS for you. Or it may be MS symptoms we don't fully understand. thus causing the doctors' uncertainty and need to confer. There is so much about MS they don't understand; ditto for other diseases which share symptoms with MS.

Praying for comfort and most of all lack of anxiety to come your way.

Mariel

[lady_express_44]

Sorry about the news, Sally.

I wrote up a "what to expect" document for newly dx PwMS several years ago, and although I haven't looked at it in a while, I hope some of the information might prove useful (and the links still work). It is still a lot of reading, but you can read the links only when you need to reference that specific information:
____________

The first year after dx is the most emotionally difficult, for the entire family. There is a lot to learn, and often the Neuros do not give us much time to decide on a course of action.

I recommend that a new MS'er do their research before agreeing to any treatment plan. At the end of the day/week/month, it is very likely many of us will go along with our Neuro's suggestions for medication, but it is important to process our grief (shock, denial, etc) and research the options first.

There are 4 mainstream disease modifying drugs used for RRMS . . . all of which are administered via injection. One is Copaxone, and it's active ingredient is Glatiramer acetate. It is known as a immune stimulator or enhancer.

The other three are Rebif, Avonex and Betaseron. They are interferons, and are known as immune suppressors. In short, the four of them are (lovingly) referred to as "CRABs" or "ABCR drugs", by using the first initial of each drug name.

The four of these drugs have been in the market for approx 10 - 15 years. Statistically they are said to help 30% of the people (over and above Placebo, only about 10% of the people in absolute terms) by lessening the severity of their attacks, and by reducing the number of attacks from 10 to 7.

About lesions:
There are many of us who have lived in limboland for many years before our dx, because the lesions weren't YET apparent in an MRI. Low and behold 5, 10, 15 yrs later, the MRI results finally catch up with the symptoms we have been living with, and then we are dx.

MRI's are just one tool used in the dx, but the results of this test, or a spinal tap, are not necessarily reliable. That is why Neuro's first eliminate all other conditions, and factor in "other" testing results (clinical, Evoked Potentials, patient history), etc. into the dx process. It's an unfortunate reality.

Lesions located on an MRI are the "proof" that we have MS, but they are not the be-all, end-all as far as diagnosing MS, or monitoring progression.

Many MS'ers have continued to progress in disability, without more lesions showing up, and without any further relapses. That is why it is not necessarily wise to evaluate the efficacy of our drug options by looking at our MRI and/or relapse reduction results.

All treatment options should be based on how we feel on them, and more importantly, whether our disability continues to progress.

When we are in an attack, the lesions are usually inflammed (enhanced on a MRI), and we are experiencing short-circuits in our bodies. Once the attack dies down, the lesions become plaque (scar tissue).

Steroids are sometimes used to hasten the recovery from an attack. They do not improve the degree of recovery, and they do not prevent the next attack.

There are plenty of side-effects that must be weighed out before starting on steroids, or the CRABs. For STEROIDS, the list includes:

Short term use:
- allergic reaction
- insomnia
- psychiatric disturbance
- stomach upset
- fluid retention
- increased appetite
- acne
- bone damage/avascular necrosis (although rare, it can occur even after a single dose of steroids)

Long-term use:
- weight gain
- high blood pressure
- cataracts
- hardening of the arteries
- diabetes
- life threatening infections
- osteoporosis, or other bone damage

Steroid Warnings: http://www.rxlist.com/cgi/generic/methprd_wcp.htm

Steroid Side Effects: http://www.rxlist.com/cgi/generic/methprd_ad.htm

As for the CRABs, attached is a good website for reviewing the side-effects, efficacy rates, etc. Just click on the left hand index to review for each drug:

http://www.themcfox.com/multiple-scl...ugs/index.html

There is also a non-mainstream drug option, with a very good reputation amungst MS'ers. You can find more information about this option in the following links:

LDN HISTORY: http://www.gazorpa.com/History.html

LDN ARTICLE: http://www.sundayherald.com/52279

LDN USER COMMENTS: http://www.remedyfind.com/rem.asp?ID=4393&lPageNum=8

LDN RESEARCH TRUST: http://www.ldnresearchtrust.org/

LDN FORUM: http://ldn.proboards3.com/index.cgi

LDN Doctor Info: http://www.larrygc.com/ldn/ldndoctorsfolder.pdf

LDN Patient Info://www.larrygc.com/ldn/ldnpatientguide.doc

MS Symptoms:

Symptoms of MS are UNPREDICTABLE AND VARY from person to person and from time to time in the same person. For example, one person may experience abnormal fatigue, while another might have severe vision problems. A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness, and bladder problems. While some symptoms will come and go over the course of the disease, others may be more lasting.

http://www.nationalmssociety.org/Bro...You%20Look.asp

http://www.cbel.com/demyelinating_diseases/

Read more about the categories of symptoms or refer to the chart below for information on a specific symptom.

MOST COMMON SYMPTOMS:

Bladder Dysfunction;
1.) http://www.nationalmssociety.org/Bro...UrinaryTOC.asp
2.) http://www.nationalmssociety.org/Bro...lling%20Bl.asp
3.) http://www.msworldboards.org/vbullet...ad.php?t=36530
4.) http://mednews.stanford.edu/releases...s/bladder.html

Bowel Dysfunction;
1.) http://www.nationalmssociety.org/Bro...lProblems1.asp
2.) http://brain.hastypastry.net/forums/...d.php?t=127734

Cognitive Disfunction (including memory, attention, and problem-solving);
1.) http://www.msfacts.org/publications/...cognitive.html
2.) http://www.nationalmssociety.org/Bro...gProblems1.asp
3.) http://www.nationalmssociety.org/Bro...ndContents.asp
4.) What is "brainfog": http://brain.hastypastry.net/forums/...d.php?t=110249

Depression and/or Emotional Problems;
1.) http://www.nationalmssociety.org/Bro...Depression.asp
2.) http://www.lamarfreed.net/indexnet.html

Dizziness and Vertigo;
http://www.houseearclinic.com/dizziness.htm

Eye Problems; http://www.site4sight.org.uk/Glossary/glos_home.htm

a) Nystagmus - involuntary eye movements); http://www.mult-sclerosis.org/nystagmus.html

b) Optic Neuritis;
1.) http://www.emedicine.com/radio/topic488.htm
2.) http://www.jandoerffel.de/on.htm This site is good but the colours play havoc with vision.

c.) Other Vision Problems;
http://www.nationalmssociety.org/Bro...n%20Vision.asp

Fatigue (also called MS lassitude); http://www.jsumption.com/imssf/modul...tid=196&page=1

**** NOTE: THE ABOVE ARTICLE ^^ IS THE BEST I'VE READ TO HELP YOU UNDERSTAND MOST THINGS ABOUT MS.

Fatigue scale:
http://www.mscare.org/journal/s0210/page_04.cfm

Abnormal Sensations (numbness, pins/needles, burning);
1.) Burning - http://brain.hastypastry.net/forums/...ral+neuropathy

Pain;
1.) NMSS Pain Brochure - http://www.nationalmssociety.org/Bro...-on%20pain.asp
2.) Pain Online - http://www.painonline.org/
3.) Introduction to Central Pain - http://www.painonline.org/intro.htm
4.) Who Gets Central Pain? - http://www.painonline.org/WhoGets.htm
5.) How Pain Nerve Cells Act When They Are In Pain - http://www.painonline.org/NerveCells.htm

Pain Scale:
http://www.valis.com/andi/painscale.html

a.) Spasticity
1.) Wrist bands: http://www.anatechinc.com/608501.html
2.) Anti-depressants -

b.) Body pain http://brain.hastypastry.net/forums/...=terrible+pain

Sexual Dysfunction; http://brain.hastypastry.net/forums/...ghlight=sexual

Walking difficulty and/or Balance Problems; http://www.nationalmssociety.org/Bro...-On%20Gait.asp

LESS COMMON SYMPTOMS

Facial Pain (Trigeminal Neuralgia);
1.) http://www.umanitoba.ca/cranial_nerv...ipt/types.html
2.) http://brain.hastypastry.net/forums/...d.php?t=127858

Headache;
1.) http://www.msworldboards.org/vbullet...light=migraine
2.) http://www.msworldboards.org/vbullet...light=migraine

Hearing Loss;

Itching; http://www.spotlighthealth.com/commo...ly%20diagnosed

Restless Legs; http://www.ndrf.org/ans.htm

Smell (Sense Distortion):
1.) http://brain.hastypastry.net/forums/...9&page=1&pp=10
2.) http://www.spotlighthealth.com/common/SG/posts.asp?m=2&sb2=&sb=12&tp=136103&tpN=Montel's%20 Corner
3.) http://www.spotlighthealth.com/commo...ly%20diagnosed

Seizures;

Spasticity; http://www.nationalmssociety.org/Bro...lling%20Sp.asp

Speech & Dysphagia (Swallowing Problems); http://www.nationalmssociety.org/Bro...Overcoming.asp

Tremor; http://www.nationalmssociety.org/brochures-tremor01.asp

Restless Legs; http://www.ndrf.org/ans.htm

A couple of good websites:

http://www.aafp.org/afp/20041115/1935.html

http://www.nationalmssociety.org/Sourcebook-Topic.asp

http://www.nationalmssociety.org/Symptoms.asp

http://www.mult-sclerosis.org/mssymptoms.html

http://www.deannandlenny.com/feeling.htm

http://www.mssociety.org.uk


The process: (for those of us with RRMS, which is most of us)

1. We have new symptoms, or worsening of old symptoms, that last beyond 48 hours. This phase of an attack/relapse/exacerbation, lasts usually anywhere from 1 to 6 weeks.

2. We then go into an attack 'recovery' phase, whereby our symptoms start to subside. Recovery lasts anywhere from 0 weeks - 2 yrs.

3. After full recovery, we may be left with some lingering/ongoing 'permanent' symptoms, or we may FULLY recover.

4. We will likely have another attack (and go through points 1 - 3 again).

**We also have flare-ups/fluctuations that will last for 24 - 48 hours, and occur usually as a result of stress, fatigue, heat, etc.

**We NEED to learn to listen to our bodies and avoid the triggers that set off the symptoms. Most IMPORTANTLY, avoid infections/a rise in body temperature.

**When symptoms occur for longer than 48 hours, we should first be checked be for a UTI/bladder infection. Bladder infections are very dangerous for MS'ers (see site link in the "Symptoms" thread, under "bladder").

**An attack is not recognized as a new attack, unless there has be a 30 day break since the last attack.

What to expect, in the longer term:

This disease is falls into a "hope for the best, but plan for the worst" scenario . . .

- we live a life of "unknowns"; "if" something will happen; "what" may happen

- we live almost a normal lifespan and won't die from MS

- there is a slightly higher chance that our children will be born with MS

- the vast majority of us never end up in a wheelchair

- we didn't cause this disease, and can only manage the symptoms; rest, avoiding stressful situations and infections, drugs, etc.

- the symptoms are highly variable for each of us

- the disease can be fairly benign, or very aggressive . . . usually the first five years will give an indication of the prognosis

- it is progressive; we will get worse, to some degree, eventually

- most of us have attacks (where we don't function well), then remissions (where things are 100%, or with some ongoing obstacles)

- many of us are happily married, to someone who is loving and empathetic (required characteristic for our mates)

- some of us can not continue working after some time with the disease, or at certain times during the process, but others continue to work throughout their lifetime

MS disease modifying and symptom treatments:

http://www.mult-sclerosis.org/mstreatments.html

Applying for Disability Benefits:

1.) http://www.spotlighthealth.com/commo...=MS%20Veterans

Assistance Programs for drugs:
1.) www.pparx.org

2.) http://www.rarediseases.org/

3.) www.edhayes.com/indigent.html

4.) www.themedicineprogram.com/

5.) www.pharmwell.com/indigent.htm

Insurance:

http://www.nationalmssociety.org/stayinginsured.asp

"Questions to ask your new doctor:

Because your doctor will be your health care partner, and a part of your life for many years to come, it is crucial that you find a physician with whom you are able to express your concerns, communicate your needs and ask questions.

1. Are you board-certified in the specialty of neurology? If not, why not?

Board certification is important, particularly in a specialty, because the certification requires that the physician stay current in his/her field of medicine.

2. How many MS patients do you see in a year?

Obviously, the more patients the physician sees, the more experienced they are with the disease.

3. How well do your patients respond to treatment?

Doctors who have been consistent in keeping current with their training tend to use more innovative techniques and newer approaches that achieve better results.

4. Do you participate in neurology research, particularly multiple sclerosis?
Research physicians are usually aware of the most current and upcoming medications available for treating this disease.

5. Where do you have hospital admitting privileges?

You want to be certain that your doctor can treat you in the hospital of your choice.

6. How do you gauge the necessity of diagnostic testing to avoid too frequent, overlapping or unnecessary testing?

You don't want to increase your health care bills because of a physician’s need to test too often and unnecessarily.

A good answer is that the tests ordered are necessary according to standard protocols for treating that condition, or there is no other procedure that will give the necessary information.

7. What is your plan for treating my condition?

Physicians who have treated a number of MS patients will have some type of protocol or systematic approach to treatment, with expected outcomes.

8. How do you determine what drug to use in treating my condition?

Although there are specific drugs to treat MS, there may be issues concerning your individual health situation that have to be taken into consideration, and other drugs may have to be used.

9. Do you give free samples of drugs and supplies?

Sometimes you can reduce your health care costs by asking this question.

10. Do you offer classes for your patients so that they can learn from each other?

Some physicians lead educational support groups for patients of like diseases. If not, ask if they can refer you to other groups.

11. Will you take the time to explain my condition and answer my questions?

It is best to write down your questions prior to an office visit, so that you are not wasting your doctor’s time by trying to think of questions to ask.
Once you decide on a physician, it is important to become an active partner in your own care. Even if your doctor is a gifted healer, he/she cannot make you well or keep you healthy without your cooperation.

A crucial step in being a partner with your doctor is to become an expert on your own health."

Reviewed August 16, 2005 by V. J. Smith, RN, BSN, MA.

NOTE: It is worthwhile to keep a diary of your symptoms so that you can summarize for you neuro when they came/went; anything new since last visit, etc.

Cherie