Multiple Sclerosis (MS) Support Group
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Okay, so I have been on this neuro/MS journey since 2004, since I became acutely ill. I have had every possible blood test for every possible problem and all are negative, except for extremely low vitamin D level of 16(normal is between 60-80...I think)and have been on mega dosage of D3 for a year. I had a negative CSF and negative evoke potential.
So, at my last appt. with the neuro nurse practicioner, we discussed other neuro diseases that I have not been tested for, such as Primary Lateral Sclerosis, ALS......She told me that if I had ALS, that I would probably be dead now. She also told me that I had a lot of lesions on my brain and that the last MRI a couple of weeks ago was "similar" to the previous ones. So, she consulted with the neurologist about me and he decided that I needed to have an EMG.
My problems have slowly getting worse, moving from the left side to the right. Now I am starting to have problems with my voice(hoarseness, especially after I talk a lot of get fatigued) and swallowing, which is what "alerted" the nurse prac. Also had what I thought was the MS Hug last summer and this summer, had my heart checked out and it is normal(EKG, stress test and neuclear stress test).
I know this is long, but I am worried. Has anybody been told that they may have PLS or ALS instead of MS? Has anybody had an EMG? I haven't told my husband or any friends about this, cause I haven't had the EMG. I am nervous about having it.
Thanks groupies!!!
So, at my last appt. with the neuro nurse practicioner, we discussed other neuro diseases that I have not been tested for, such as Primary Lateral Sclerosis, ALS......She told me that if I had ALS, that I would probably be dead now. She also told me that I had a lot of lesions on my brain and that the last MRI a couple of weeks ago was "similar" to the previous ones. So, she consulted with the neurologist about me and he decided that I needed to have an EMG.
My problems have slowly getting worse, moving from the left side to the right. Now I am starting to have problems with my voice(hoarseness, especially after I talk a lot of get fatigued) and swallowing, which is what "alerted" the nurse prac. Also had what I thought was the MS Hug last summer and this summer, had my heart checked out and it is normal(EKG, stress test and neuclear stress test).
I know this is long, but I am worried. Has anybody been told that they may have PLS or ALS instead of MS? Has anybody had an EMG? I haven't told my husband or any friends about this, cause I haven't had the EMG. I am nervous about having it.
Thanks groupies!!!
The purpose of the EMG is to assess the health of muscles by measuring their response to stimulation. This can help doctors in diagnosing MS and other conditions when a patient has unexplained muscle weakness. If you've ever heard anyone describe an EMG test in detail, you might wonder if it's a modern day torture device and be tempted to run for the hills. Well, you can relax. While far from a pleasant experience, it's not something you need to fear. Depending on what your doctor is looking for, it will take from 30 - 60 minutes to complete the test. Wear clothing that will allow access to the muscles to be tested -- loose fitting shorts and a sleeveless shirt work well. There is no need for medication before or during the test and, other than some discomfort, you will more than likely walk away with nothing more than soreness, none the worse for wear.
Having and EMG is a lot like going for a root canal, much easier if you don't build up the fear. If you can remain calm and relaxed, the experience will go much easier. Tensing up or sudden movements will not work in your favor. Electrodes will be placed on your skin in various places and the nerves will be stimulated with mild electrical impulses while the muscle activity is recorded. A needle is inserted into the muscle to detect electrical activity. The doctor may ask you to alternatively contract and relax a particular muscle. The needles feel similar to receiving an injection, although nothing is injected. Healthy muscles show no electrical activity during rest, while abnormal electrical patterns indicate disease of the muscles or nerves. The EMG test is NOT a definitive test for MS. It is merely one test of many that aid physicians in the sometimes arduous process of diagnosing MS. An EMG may provide no evidence that you have MS, but it will eliminate a few other possibilities, allowing your neuro to move on to other diagnostic tools. If you're concerned about an EMG, just keep this in mind. It may bring you one step closer to the answers you seek.
I would share this information about having this test with your husband and let him know exactly what is going on with your dx process. You have been undergoing tests for 6 years with no dx, that is a long time and a lot of stress on you. Sharing this information and obtaining his moral support may help alleviate some of your anxieties knowing that he is there cheering for you.
The nurse told you that if you had ALS "you would probably be dead right now." That is horrible that she would say that! Have you seen another doctor? 6 years without a dx is a long time and it doesn't sound as if you are any closer than when you first started seeing the doctor? Your profile certainly suggests some serious symptoms of MS.
You don't mention some other pertinent tests associated with a dx of MS, such as those used by neuros called the Schumacher criteria to confirm a diagnosis of multiple sclerosis. Though these criteria are now largely outdated, an MS diagnosis remains a clinical one. They are also worth looking at because they are the simplest statement of what MS is, clinically. Try doing a google search on the "Schumacher criteria"
Have you had a LP?
I'm sorry you are having such a hard time with obtaining the answers to your questions about your health. Keep pushing for an answer, and consider another doctor if you have been seeing the same one for these past 6 years. Keep us informed of your progress, and Good Luck.
I have been diagnosed with MS, "probable MS", not MS...just depressed.
So, I guess you have had a diagnosis (and a LP!). Sorry for the confusion!
But if you have been on Copaxone then you have a "firm dx?" I don't understand I guess.
With the swallowing/speach issue and weakness on one side, it certainly sounds like you are in a flare. I'm sorry you are not feeling well,and I hope you find the answers you are looking for. When I have my nerve conduction *EMG) test it resulted in my Pain Management Doctor treating that pain I experience which was confirmed by the test. I hope something works for you. Best wishes - Lynne
The neuro that put me on Copaxone, saw me when I was acutely ill. She did a history and exam. She left the MS clinic and went into sleep study. I have been "shuffled" around from neuro to neuro since then. I do not have RRMS, which is why another neuro took me off of Copaxone...should never have been on it. Original neuro told me I had "possible MS". Other neuros have told I have "unusual MS", not MS, mini strokes, just depressed(and that causes my left side to be weak???). Obviously there is a neuro problem because I have a lot of lesions. I have been weak on my entire left side since 2004 and slow progression to the right. It is been proven that I do not have optic neuritis and have a negative CSF. Sooooooo, bounced around I have been! Hopefully they can now put a name on it. I have had soooo much blood work.....last neuro took 12 vials and all negative to any neuro problem that could show up in my blood. It is obvious that I am ill, that is not the question....I just want the answer!