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Multiple Sclerosis Message Board

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If MS is suspected and you have been referred to a neurologist, please make sure that the neurologist either sees many MS patients and/or has had experience in diagnosing MS cases. To be in the best situation, ask to see an MS Specialist.

Things to do before your visit:

1. Although you will probably have hundreds of questions, prioritize your questions because the doctor’s time will likely be limited. You can ask many of your questions on this board and reserve the personal issues for your doctor’s medical opinion.

2. A journal. Some places call this a symptom diary. Keep your records short and simple. What symptom presented, how intense was it, any possible triggers (were you eating, was the temperature in your surroundings hot, etc.), any relief from meds, etc. If you have to wait 3-6 months this journal can get long. About 3-4 days before your appointment, summarize your symptoms into a one page writing. You can bring copies of your journal along with your summary, but the summary will allow the doctor to make use of your appointment time the most efficiently.

3. Print a copy of the Revised McDonald Criteria to use as a “road map” and to allow you to have a kind of check list.

4. Tests and medical records performed outside of the MS Specialist’s location. Even with the electronic age, records do not always get into the right hands. Having a copy with you can save your valuable appointment time as well as eliminate the need to re-test for something. Remember that your list of meds should include any and all vitamins and supplements and herbs.

5. Bad news or simply appointment anxiety is hard for some people. While not required, it can be beneficial to have someone there to speak for you or simply to be your friend.

6. Note taking material. If you cannot remember, you need to write it down. Your friend can help or the Dragon Diction is a free app for your mobile device which can “write it for you” as you speak.

What to expect for your visit?

1.If you have had preliminary tests for non-MS possibilities, you are in the race to the finish line already. Bear in mind that if blood tests were not complete, they will have to be re-taken.

2. The initial visit can be a s simply as a series of balance and coordination tests. A pin poke, test for Babinski reflex, a tuning fork, an eye check, etc. Non-invasive.

3. Based on this exam, you might be ordered to have an MRI if you have not already. Your MRI should be done with and without contrast with a minimum of your head and c-spine (your neck).
4. An evoked potential test such as the VEP (visual evoked potential) can help point the right direction for your diagnosis (non-invasive test).

5.You might also be asked to have a spinal tap (or Lumbar Puncture (LP) ). It sounds worse than it is. There are many MS mimicries which can be eliminated with this test.

6.Do not think that you will have answers right away. In order to diagnose MS your doctor has to eliminate mimicries. There is no specific test for MS, which I think, makes it more important to see an MS Specialist.

Each MS Specialist might vary, but most will follow the Revised McDonald Criteria. The aforementioned information on what to expect was a summary of my experience and may not be the same for others. Your experiences may certainly vary.

I have found that even with a diagnosis of MS, a journal is still good because you might forget something between appointments or you might have cognitive issues. I have found that keeping a journal allows you to discover your triggers. Once you know what your triggers are, you can avoid those which are avoidable and really feel empowered. As to the unavoidable triggers, you can prepare yourself in advance and when they do occur, you will not be shocked or surprised and you will have a plan in place to deal with it- again- you can empower yourself. MS need not rule you or control your life. You are in the proverbial driver's seat. Your MS? Toss it in the trunk and lock the lid!! :D

Please feel free to add to this thread.

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