Last reply 1 year ago
Newbie… Possibly have MS.

Hi! I’m a 44 year old female that has been having symptoms for last 6 years. I’m A Veteran so all my care is through the VA. I would go to my Dr with an issue, and he would send me to a specialist for that particular symptom. This has been happening for last 6 years. I got so frustrated that no one would look at ALL my symptoms as a whole. I kept telling them SOMETHING isn’t right. Then, with all the chronic pain, they started treating me for Fibromylagia. Those meds are not helping. 6 months ago I started getting muscle twitches all over my body. At first, would only be when I woke up and laying in bed. I thought maybe a sign I slept too much. But then twitching started all the time through out the day. I hate it! When I’m active, I don’t notice it, but when I’m relaxed it feels like aliens are controlling my body! While typing this, legs and arms are jumping like crazy! I told my Dr and he did some sort of routine blood work and said all looked good. He Was going to leave it at that. That was my breaking point and told them I wanted to see a specialist to figure out all the symptoms! No way this is normal! Finally got an apt with neurologist. I had to wait 3 months but saw him 2 days ago and went in loaded with this list of issues:

Blurry vision episodes
Pain behind right eye
Sensitive to smells/light
Can’t hold bladder
Chronic pain everywhere
Numbness in toes, fingers and tounge
Twitching all over!!!!?
Extreme Fatigue
Knee problems (Surgery is April 1st on first knee)
Spine degeneration
Concentration issues
Panic attacks
Sinus issues

Finally someone listened more. I had an MRI a few years back. It showed some small lesions then but nothing they seemed to be concerned about. Now I wonder if that was a sign there! The Dr is switching some of current meds around and first time I heard of possibly having MS seriously. He said I could have a spinal tap to find out for sure or wait to see if new meds would help. I knew nothing about MS so said maybe just wait. (I have a follow up in June) But after returning home and reading about MS… Its me to a T! I called and told nurse that I DO want a spinal tap now. I know some of my issues probably aren’t related to MS…. But most are. I’ve been on Tylenol 3 daily for last 6 years. (8 pills a day) for chronic pain. It don’t really help at all. I can at least get out of bed when I take it. I’ve been searching for months what could cause the muscle twitches all over. Now I see that is a symptom of MS also.
Would love to know what I should or could ask my Dr to make sure I’m asking right things to find out for sure. Thanks for reading my ramble! Oh, and does anyone else have a real sensitivity to smells? I can’t wear perfume and can’t be around others that do!

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My unprofessional opinion tells me that something is wrong with the way the dr is explaining or recommending things to you. Maybe others on this site can comment. First off I don’t think a lumbar puncture will tell you for sure. It’s a good indicator but not a definitive test. The fact that the dr is implied that is concerning to me. Second I would think you need another MRI before anything else. Seeing if you have more legions then last time seems the first thing to check. In fact I would demand that. Lastly what meds is he hoping would help? If you have MS what do those meds have anything to do with it? Why would he suggest to wait to see if they help.

All in all seems like you are getting the run around. I would do some research on this site and I use as well and get familiar with your options and advocate for the tests you need.

1 year ago

Hi @shannon_casey_green , it should be the Neurologist that should be driving the diagnostic tests and treatment options. This is a too specialised area for a general doctor to be treating symptoms.

If it is MS, then this can cause various types of pain. However, Neuropathic pain is not unusual and is not treated with normal painkillers :-

I agree that you need another MRI. The brain can accumulate lesions, as part of the normal ageing process. So, it would be good to see what’s going on now.

FWIW, I know someone else trying to benefits from the VA. It took him a while to get the tests done but it did happen. Its a bit of a challenge but keep pushing to make sure you get what you are entitled to.

The current meds I’m on are:

Tylenol 3 w/ codeine 30mg
Gabapentine 1800mg daily
Duloxetine 60mg daily
Methophenidate 20 mg daily
Sumatriptin 25mg
Hydroxizine 10mg
Melitonin 6mg
Prozosin 1mg
Klonopin .5mg as needed

Neurologist upped my gabapentin from 1500mg to 1800 mg. Added magnesium and B2. He don’t like that primary Dr has had me on T3 for so long. He is starting me on a new med that starts with a T…. Non narcotic and suppose to help with chronic pain. I forget the name and it’s being mailed to me from the VA. He also don’t like that psychiatrist out me on methaphenidate to increase energy level.
Those not familiar with the VA…. Is not easy at all to get seen in a timely matter. Dealing with the VA is rough. I did message my neurologist after reading comments and said I would like a repeat MRI.
I hear many of you talk about relaspes. My issues never seem to calm down. Is like constant! The muscle twitching is the worst. I did have a nerve conduction test. My nerves in lower back do not respond but upper back is OK. I wish there was something to help with the twitching!! Is there anything?

1 year ago

@shannon_casey_green , have you tried Baclofen, a muscle relaxant?

That new painkiller, is it Tramadol?

My primary Dr won’t prescribe me a muscle relaxer. I asked. And not Tramadol…. The one he is putting me on is a Non-narcotic. I feel my dr thinks I’m a hypochondriac. But he is the only VA dr at the small va clinic in our town. The closest VA hospital is 100 miles away. That is where I have to travel to for any MRIs or to see any specialists. I know that highway well!!! Frustrating. Va is the only insurance I have so if I went to a regular Dr, I would have to pay out of pocket. 🤐

1 year ago

@shannon_casey_green , Baclofen is a bit of a double-edged sword. It can provide relief from spasms, but it can also make a muscle weakness, e.g. weak leg(s) seem worse.

It’s a case of finding the right dosage for you the provides the relief, without making any weakness worse.

That is, unless there is a contraindication with one of your present meds.

My Dr wouldn’t prescribe a muscle relaxer.

The new medicine the neurologist put me on is TOPIRAMATE 25mg. He is hoping that it will help with the migraines and headaches I get. They have been getting worse and worse.

I just hope I can get another MRI soon to see if there are changes. It’s basically sad that I’m almost hoping it does show MS…. As then I will at least have an answer to what is going on. I feel like people just don’t believe that I have all these issues. Seems like I get a new issue every week!

1 year ago

@shannon_casey_green , well, good luck with everything.

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