Please help me

[k2626]

Hi all. I am hoping for some feedback. Since January I was feeling kinda run down, cranky and was getting some dizzy spells (I have had those for at least 15 yrs on and off), also I was getting pressure pains behind my eyes, thought it was from revitalash or lasik. I went to my dr thinking it was my thyroid, it was fine.

Well at the end of May my dad was dx w terminal pc. A wk after his dx, I was walking and had a sharp pain in my lower back, I could not walk (thought it was an old injury acting up) well 10 min later it was fine. About 1.5 wks later I came home from work and all of a sudden my left ankle was killing me, I thought I had sprained it, it felt like it was going to snap in half. Well, in the morning it was fine. However two days later my entire right foot felt like it was being crushed, toes included....about 30 minutes later it was fine. I then (daily) started getting random pulsating pains that would dart around my body (anywhere from a second to hours)--usually, feet, ankles,toes, shins, back, fingers (usually one finger at a time). I also notice extreme joint cracking and one of my feet (not both at once) would vibrate on and off. The pains were so deep I thought it was bone cancer, went in for a bone scan it was fine. I also had sharp pains in my abdomen on and off-ended me up in the hospital, I was fine--IBS maybe. Well, its 4 months later and I am still having all of this except now for the past month I have had non stop muscle fascilations all over my body-DAILY ALL THE TIME.

I have had nerve testing-it was fine. I had an MRI (no contrast) of my head and full spine, it was fine. However, I have been told one could have MS and it not show on the MRI, so of course that does not sit well with me.

I am not sure what to do at this point. I do not want to get a puncture to further rule out or in MS.

What are your thoughts on this? Does this sound like I have MS? Does MS pain just hit one day and jump all around your body? What other tests should I have done? I am so nervous I cannot get these muscle facsilations to stop not the vibrations, I can live with the little pains that dart around my body.

Thanks so much

[k2626]

Hi Quix, just wanted to update you on my c spine results since you were so kind to reply to me.

My dr said I have a crack in my c5/6 which is pressing on the surface of my spinal cord. I have no clue but this MAY be an answer to SOME of my issues-ie twitching, buzzing and maybe even the random pains. My neuro wasnt sure (he is awful by the way), but my primary is pretty worked up on this and wants me to see a NS for an opinion.

SO I am going to my regular neuro on Monday, another one on Tues (I like 2nd opinions) and the NS in November.

I will be shocked if this is what has caused all of this, but I want to make sure I have a definative so I do not miss anything else.

[julia111]

Quix,

Just wondering if shooting/stabbing pain that occurs in the same places would be consistent w/ MS?

For me, this is new pain - same spot on right side of head which is more of a piercing; stabbing electrical shock on right side of neck (usually upon movement); back;  right hip;  right buttocks; right leg . . . this is new to me this week . . .

Last night it started in my right buttocks and at the same time I was having balance problems as I walked which did not last long as I took a seat right away.  This has been going on for several days, but it's not constant.

Based on this and other symptoms including speech problems, muscle spasms etc. . . . my PCP supports me in pursuing more testing and a specialist.  Dx. from Mayo earlier this year was Fibromyalgia.

Thanks,  Julia

[k2626]

Hi Quix, we must have posted about the same time. Thank you for your information, it was very kind of you to reach out to me. So with MS, it does not typically present itself in terms of having pains all over the body at different times of the day? The onset was on my left ankle which was fine the next morning. However then I started getting pains the next day on my shin, my other foot, back to my ankle, a finger, then a toe. The pains have gotten some what better but I still get them. Last week my big toe was pulsating. The other night I had a nerve pain for a full day on the underside of my left foot that just kept pulsating, it hurt when I pressed on it. Yesterday I was getting a pain in my finger, then some random pains to my shins. So the pains are not as frequent as they were in the beginning but the muscle fascilations are.I did of course google twitches when they first onset and thought ALS, but I knew that was rare, and I did get an EMG. I however did read that muscle fascilations all over the body was a symptom of MS?I may perhaps try Cymbalta to see if it helps. It is nerve wracking (LITERALLY) to have this all go on without any diagnosis so I just sit here and think about it everytime I get a twitch, buzz or pain....I really appreciate your input

[k2626]

I am so depressed today all. I am so confused by the fact that one could have MS and a complete clean MRI of full spine and head. I dont know what to do.

Is it possible with MS to have ALL symptoms of pain come on in one week? It was June 13 when I woke up with pain/and pains that shoot all around my body and then 4 days later the vibrating feeling in my feet on and off. The twitching however did not come on till last month and has not left me for one day.

I feel very helpless not knowing what is going on and what this could or could not be.

[Quixotic1]

Hi, and welcome to the forum.  First, let me say that I am very sorry for your loss.  I recently had a big scare with my dad and I got a peak at what it means.

I would have to say that your pattern of random, severe pains that last a short time and appear somewhere else later or the next day, does NOT sound like MS.  MS causes symptoms by actual attacks on and damage to the nerves of the central nervous system.  By definition an attack of MS causes symptoms that are felt (either continuously or frequently) for more than 24 hours.  Brief guerrilla-attacking pains do not fit with MS at all.

Now you are having fasiculations all over.  This also is not consistent with MS.  This is more consistent with a viral infection or anxiety.  Actually any insult to the whole body's muscles can do this.  Once they get started the fasiculations can last many months.  You should google "benign fasiculation syndrome" for a full discussion of this common - and very disturbing - problem.  

If you explore fasiculations you will undoubtedly come across ALS and this will likely be terrifying.  This is not the way ALS presents.  It presents with weakness that does not improve and gradually gets worse.  The fasiculations occur in the muscles that have already sustained damage and are wasting away.   They do not occur throughout the whole body until very late in the disease.   I mention this because it is often the next question when someone gets fasiculations.

I want to say the next thing very gently.  It sounds like the terminal diagnosis of your father may have set off some severe health anxiety - which again is very common in your situation..  This can heighten the severity of pains and other sensations.  I believe it would be a mistake to chase each severe pain with a work up in that area - ie, bone cancer, acute abdomen, arthritis, etc.  I do believe that you are having all of these pains, but would encourage your doctors to look, if anything, for something more "systemic" or bodywide.  An example of things that can cause diffuse attacks of brief pain, or joint cracking, fasiculations and the feeling of generally being "unwell" is an infection like hepatitis or Lyme Disease.  The former has probably already been ruled out when they did chemistry panels for your other pains.

I would ask you not to discount the role anxiety might be playing here in amplifying sensations in your body.  The forum here knows I would never dismiss someone's complaints as all in their head, but I am very respectful of the power of a frightened mind to play havoc with the body.  If you have any feelings of unrest, ongoing fear, worry about having a terminal illness yourself, I would encourage you to see someone and have any anxiety treated.  Once it is treated (if it is there) you and your doctors will be much better able to evaluate any symptoms or problems that are left.

Again, nothing that you mentioned suggests much toward you having MS.  I hope this doesn't chase you away.

Quix, MD (unofficial, dx'd with MS)

[k2626]

Thanks for your response. I heard a visual evoked test may be a good alternative? I am just frightened by all of this and just want an answer either way....

[Lulu54]

... until the cause is FOUND not  find.  I can speak correct English most days.

[Lulu54]

Hi K,
I am not the medical guru here so I can't comment much on the pains you are experiencing, but we do have several well-versed members here who will probably come across your post and help out.

My LP in September was effortless and painless, and I have very little residual problems.  Some people have a horrible time with it.  Either way, an LP would be helpful but again would not be conclusive that you do or don't have MS.  

Whatever the source is of your pain, I hope you can find a doctor to work with who will be diligent and stick with you until the cause is find.  

I hope we see you here often,
Lulu