MS or something else?

[Cfuller00]

I was diagnosed with MS in April 2015. It was a very long road to get to the diagnosis and actually happened by accident. I had filed for divorce and went to bed one night, woke up the next morning and could not see out of my left eye. I related it to stress and waited another two weeks before calling the eye doctor. (I have never worn glasses). He did hours of testing and sent me to a neurologist telling me my vision was fine. The neurologist ended up doing 3 MRIs and a spinal tap before telling me I had MS. He now thinks after we discussed my medical history that I was misdiagnosed for 15+ years. I have had Bells Palsy 4 times which isn't normal and should have been a sign much earlier to my physicians. Other than thinking I had a thyroid issue over the years I was healthy. I have never been treated for anything long term (anxiety, depression, ect.).
With a little background now my question is in the last few months (about 4) I have noticed I have uncontrollable shaking (past the point of tremors, actually full body shaking) if my fight or flight kicks in. I do not have anxiety and have never experienced symptoms anywhere close to this level in the past. Normally I am fine. This generally only happens when I get angry with my ex or I am at work in an unusually high stress situation. Today, I had one of the situations at work and in addition to the shaking I had shortness of breath to the point I could only manage about 5-7 words without pausing for a deep breath. Again, this is abnormal for me and I am otherwise healthy. Once the issue resolved I began breathing normally and the shaking stopped immediately.
These symptoms make me crazy as I don't like the feeling of not being in control. I am just wondering if this is a MS symptom or a side effect of my Copaxone. Any thoughts?

[Cfuller00]

I have been taking Copaxone for over a year but the symptoms are new (about 4 months now). I didn't know if it could be related to the MS (anxiety driven even though I don't have a history of anxiety) or something totally unrelated. I was just wondering if anyone else has had symptoms like these

[Snoopy]

Hi Cfuller00,

I am just wondering if this is a MS symptom or a side effect of my Copaxone

Neither.

in the last few months (about 4) I have noticed I have uncontrollable shaking (past the point of tremors, actually full body shaking) if my fight or flight kicks in.

This generally only happens when I get angry with my ex or I am at work in an unusually high stress situation.

Today, I had one of the situations at work and in addition to the shaking I had shortness of breath to the point I could only manage about 5-7 words without pausing for a deep breath.

Anxiety, anger, stress can cause the physical response you had. This can also trigger the fight, flight, freeze response. Think of it as an adrenaline rush but it's not the good kind we experience when doing the things that excite us.

Once the issue resolved I began breathing normally and the shaking stopped immediately.

This fits into what I posted above. Once you are able to gain control and calm yourself your symptoms (shaking, breathing) will return to normal. Mindful meditation can help with stress, anger and anxiety. With time and practice you will have more control over the situations that trigger the symptoms you had. Medication for anxiety may also be beneficial.

[Cfuller00]

Thank you for your response. My flight or fright response has in the past been basically a textbook response. I guess I am trying to determine why within the last 4 months the shaking and breathing have become so extreme. I am wondering if it is related to either the diagnosis or meds or if I have something else triggering such exacerbation of symptoms

[Snoopy]

I guess I am trying to determine why within the last 4 months the shaking and breathing have become so extreme. I am wondering if it is related to either the diagnosis or meds or if I have something else triggering such exacerbation of symptoms

Our lives can get complicated and stressful with a whole host issues. If you take a step back and objectively look at what has been happening in your life for the past 4 months I bet you will have your answer. It's also possible that it's not something that's happened in the past 4 months, it could be an accumulation of things that have finally hit you and your body is reacting.

When you are having breathing difficulties and shaking but you calm down or an issue resolves and those symptoms normalize indicates those symptoms are NOT related to MS or medication. This would strongly suggest anxiety or other things such as fear, anger and stress. The shortness of breath you describe is indicative of this also. When we get into the heightened state you described our breathing is no longer normal and we are either not getting enough air or hyperventilation can happen.

[lyndacarol]

I guess I am trying to determine why within the last 4 months the shaking and breathing have become so extreme. I am wondering if it is related to either the diagnosis or meds or if I have something else triggering such exacerbation of symptoms

Have you seen your GP for a general examination? It might be worthwhile to request a vitamin D blood test (the "25-hydroxy D" test) – ask for your own copy of the actual test results.

Vitamin D is necessary for every system in the body (nervous system, respiratory system, cardiovascular system, and all the others) – a deficiency can cause any kind of symptom.

[Cfuller00]

Thank you for the suggestion. I actually did have my labs drawn last month including vitamin D. For the first time ever in my life my vitamin D is within normal limits. It has always been critically low in the past. All my other labs came back within normal limits. I actually have copies of them to verify and compare for changes from previous labs.

[lyndacarol]

Thank you for the suggestion. I actually did have my labs drawn last month including vitamin D. For the first time ever in my life my vitamin D is within normal limits. It has always been critically low in the past. All my other labs came back within normal limits. I actually have copies of them to verify and compare for changes from previous labs.

If I may ask, what was the actual number result for your vitamin D test? What was the reference range used by your lab to determine "normal?" There is much controversy over the ranges used by labs for several different tests, including vitamin D – experts are saying that the ranges are set too low, that the "low normal" is actually a deficiency or insufficiency.

When you say that your vitamin D level has been "critically low in the past," how low was it? Do you have any idea how long it was at this low level?

[Cfuller00]

I don't mind sharing at all. They checked my level the first time 8 years ago and it was 4. I have had it check in the same lab and the reference range is 30-60. I was not diagnosed or checked for MS until early 2015. I starred with over the counter supplements and it was rechecked where it remained at 4. They started 50,000u weekly and checked it again. It was 12 at this point and was still at 12 in 2015 when they finally checked me for MS. I started the Copaxone and continued taking 50,000u of Vitamin D. I was just rechecked again in June and it was 57. I do not know how long it was low prior to 8 years ago because it had never been checked

[lyndacarol]

I don't mind sharing at all. They checked my level the first time 8 years ago and it was 4. I have had it check in the same lab and the reference range is 30-60. I was not diagnosed or checked for MS until early 2015. I starred with over the counter supplements and it was rechecked where it remained at 4. They started 50,000u weekly and checked it again. It was 12 at this point and was still at 12 in 2015 when they finally checked me for MS. I started the Copaxone and continued taking 50,000u of Vitamin D. I was just rechecked again in June and it was 57. I do not know how long it was low prior to 8 years ago because it had never been checked

I am appalled at your history of vitamin D levels! In my opinion (I have no medical background), your case sounds like gross malpractice! Please read everything you can find on vitamin D deficiency; I encourage you to start with the California-based GrassrootsHealth (http://www.GrassrootsHealth.net). As you will see, their current recommendation for a reference range is 40-60 ng/mL (there are neurologists who recommend that patients with neurological symptoms should reach and MAINTAIN a level between 80 and 100 ng/mL). You will find the names of experts in the field and links to important research on the GrassrootsHealth website.

In particular, a GrassrootsHealth newsletter (http://www.thisisms.com/forum/coimbra-h ... 27529.html) has discussed the work of the Brazilian neurologist Dr. Cicero Galli Coimbra, who uses VERY high doses of vitamin D. There is a forum here at ThisIsMS which has more details:

http://www.thisisms.com/forum/coimbra-h ... tocol-f57/

If your GP, neuro, or any of your current doctors is unwilling to investigate this problem thoroughly, please find a new medical team; see an endocrinologist; find someone with a real interest in vitamin D. Vitamin D is used by virtually every cell in the body, it is critical to every system in the body.