very concerned

[someqs17]

Hi,

I'm concerned about potentially having MS. The symptoms lasted for a few days and then they subsided. One week ago I started experienced extreme dizziness and some fatigue again. This is extremely abnormal for me.

The reason I'm concerned about MS is because a few days ago I started getting tingling/numbness in my legs. My legs also feel very weak. This has lasted for several days. Also, I read that heat can make MS worse...well, after I took a hot shower today, I started feeling worse and now all my leg muscles feel really sore and achy.

So, dizziness plus muscle weakness plus tingling. I am very worried. I went to my primary doc today and he thought these symptoms sounded too vague and wanted to put me on antidepressants.

I'm really concerned though-- I do not feel like myself, and something is wrong.

Any thoughts?

[someqs17]

Hi all,

My story is above. I have having symptoms of MS on and off for about 6 months. Negative MRI on 1.0T after 2 months and negative LP after 3-4 months of symptoms. Went to neuro-opth and they did an OCT test of the optic nerve which showed thinning. They said could be 1 of 3 things-- 1) my nearsightedness, 2) glaucoma even though they didn't see any of that or 3) mild MS. I was stunned and didn't ask many questions- wants to re-do the test in 6 months. Called back, spoke to someone who works with him and she said that the OCT test can sometiems show MS first, before other tests, ie: LP. Is this true? I had almost put MS to bed and now it's resurfcaed and I am concerned. I appreciate your input

[someqs17]

so I'm having a LP done in a couple of weeks. I'm wondering how much is this gonna hurt? Also, how accurate will results be if negative and if positive?

I have been having very concerning symptoms of MS for 3 months-ish. the symptoms are very come and go, but many are very worrisome, particularly random vision blurring, feeling dizzy but not vertigo dizzy (more a dizzy in my eyes and like my eyes can't coordinate/focus, muscle pain (comes and goes), had pain in my eye for a couple of days with targeted headache, arm shakiness/weakness/aches that comes and goes but can last from early afternoon til bedtime where if I rest my arm down I can literally feel them shaking/buzzing, tingling in the beginning, and today my tongue felt numb (like I put numbing spray on it but I didn't).

Had an MRI after symptoms for a month on 1T machine (weak I know) and it was clear. Went to see a neuro a few weeks ago and am doing the LP.

How good are they?

[someqs17]

Ok so I'm having a really scary symptom...and it's not the first time, but I wrote it off the other times it happened because it is ONLY in the dark. Only in the dark now, when I close my left eye and look out my right eye, things are very distorted...I can't see certain objected in a distance, the color is dimmed, and its blurry. When I look out my other eye it's perfect. However, if I'm looking at something really bright in the dark, like a computer screen, the right eye does not do this. However, when I look in the distance, for example, to a window with a red curtain and look through just my right eye, it's distorted, I can't see parts or all of things, and the color is off. This only happens in the dark, but it's really freaking me out.  It seems to really happen most pronounced/significantly when I look at something bright (i.e.: computer) and then look to the distance, I get severe distortion of color and blurriness. In the dark, when I look out my left eye, I can see my large 52 inch TV. When I look out my right eye, I can't see the TV at all!!! But this doesn't happen every time. In the dark, things disappear from my vision. Can this happen with MS?? Is this the optic neuritis? It doesn't always happen, but it does on and off when I tested it out.

[MarisaV]

It looks like they did all the standard tests for Lupus and other autoimmune diseases. However, what I and other Lupus sufferers have found out (and what my Rheumatologist admitted to me) was that being negative on the tests doesn't prove anything. The antibodies come and go, and you just have to be lucky enough to catch them at the right time (I've had blood tests done in the middle of a bad flare up and had them come up all negative. I've heard other people say the same thing).

As for my vision, I do have a lot of eye pain, and my vision changes a lot. I can be watching tv, and see the screen perfectly fine, then all of a sudden I notice that my vision has changed and I can no longer see the tv clearly. No one has ever been able to explain why this happens.

Lupus is a relapsing/remitting disease, so the symptoms come and go, and you may get different symptoms at different times. Certain symptoms I have all the time, others I have in 1-3 week cycles (or there a bouts).

Even though your RA factor is just barely above the reference range, some doctors would probably consider it significant. RA can also cause eye pain.

I hope you get some answers soon.

Take care.

Mar

[someqs17]

Hi Lulu,

I've definitely considered Lupus. They did a blood test for it (ANA w/ reflex) which was negative. I think thats for Lupus?? I also considered RA, but I have other symptoms that don't seem to fit...like the vision. I've found that to be the most frustrating of all my symptoms. As for what was tested for, my doctor did Lymes, Sjorgen's, RA factor (which was 14.6 slightly above the normal range),  sed rate, creatine kinase, c-reactive, and urine culture. Everything was negative/normal except the RA factor which was slightly high, but my doctor said it was only ever so slightly above the normal range (0 to 13.9) and it wasn't significant.

Did he miss anything?

Seeing a neurooptemologist is a good idea. I am seeing the optemologist for a second time this week, so I will see if that provides any answers, but I'm very concerned about the optic nerve, and maybe someone with more of a neuro focus would be more appropriate.

[someqs17]

Interesting...they did do a blood test for lupus which came back negative so i disregarded that possibility, but maybe I should look into it further. Did you have vision problems? That symptom has been the most bothersome for me in the last few weeks. The muscle and joint pain aren't constant...it comes and goes, and it's been totally fine for about a week, however the vision problems are constant and extremely frustrating. did you have that problem too? It doesnt really seem like the vision problems associated with MS...it's more like my eyes aren't coordinating with each other, are blurry with movement, and are just somehow very, very "off" to the point where it's almost impossible to watch anything...

[MarisaV]

I don't have MS, but I do have Systemic Lupus. I had all the same symptoms you have (and more) when they finally diagnosed me. Was even told to go see a psychologist several times too. I've probably had Lupus most of my life (about 30 years), given my recurring symptoms.

I'm not saying you have Lupus. But just want you to know that Lupus can cause symptoms like MS (I thought, initially, that I might have had MS), except for the joint pains, and  that its very difficult to properly diagnose Lupus. I was told three times that I definitely did not have Lupus. The forth and fifth time I was tested, however, all the stars aligned, and I was eventually diagnosed with it. I suffered with these bizarre symptoms, intermittently, for 30 years.

So, don't let the doctors beat you down, or destroy your confidence in yourself. If you continue having symptoms, keep reporting them to you doctors. Eventually, they'll figure it out.

Hope this helps some.

Mar

P.S. Last time I saw a Psychologist (because my doctor refused to treat me anymore unless I saw one), when I told the Psychologist why I was there, he rolled his eyes and said, "Doctors are always sending me patients because they think its a conversion disorder. Its very rare, almost no one has that."

This is now the second psychiatric professional that's said that too me in my life.

[Lulu54]

what is the outcome of all those tests that were run besides the MRI?   RA or Lupus should still be in the differential from the sounds of your symptoms.

  It sounds like the doctors are doing their best to reassure you that it doesn't look or sound like MS to them.  I'm sorry that doesn't seem to give you any relief and this is still a source of concern for you.

Vision problems?  If they continue, see if you can be checked by a neuroopthamoligist who can give you a very thorough exam.  

Have you read our health page on what neurologist have to consider when looking at possible MS?  It would be worth you while to take the time to see what else is there that might also fit your problems -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36

be well, Lulu

[someqs17]

I'm bumping my thread b/c I've been having really frustrating eye symptoms recently and have had, for many weeks prior, other symptoms of MS.

My eye symptoms are weird...it feels like my eyes aren't coordinating with each other and it's hard to watch tv or do anything really...also, for the last few days my left eye feels sore and hurts to the touch. I'm concerned its that nystagmus or optic neuritis associated with MS. Went to the optemetrist and she did some test on my optic nerve and said it wasn't normal, but that I'm very near sighted so it's not always normal in those people, and that I need visual field testing, which I'm doing next week.

I'm concerned...I was scared enough when I had dizziness, tingling, muscle and joint pain, and muscle weakness...but now my eyes are worrisome. Do these eye symptoms seem typical of MS?

I got another script for an MRI, but it was only of the brain and w/o contrast. going to see a new neuro in 2 weeks, should i ask him to also check c-spine?

[someqs17]

I went to see a neurologist today, and he didn't take me very seriously. I had low blood pressure and he tried to pin all my symptoms on that -- really? I need a new one. Anyway, he re-wrote me a script to get an MRI done on a 3.0Tesla MRI instead of the 1.0Tesla which was good. However, he only wrote it out for Brain w/o constrast. I asked him "what about the cervical spine?" He said it wasn't necessary. I asked if he could do it anyway, and he refused. First of all, WTF, and second of all, is the brain alone sufficient or should I try to get my original dr to write me a new prescription for the brain/cerv spine w/ contrast??

[someqs17]

Oye. So I did some reading on the MRI strength and how that makes a difference. Well I called the MRI place I had mine done at, and they said it was a 1.0? Seriously? From what I've read the lowest is like a 1.5. This place was solely for MRIs...how could they have such a weak machine?!??!

[someqs17]

really? i've read that joint pain and muscle pain can be a manifestation of MS. I thought i saw that on webmd. i feel like i also have a lot of the other symptoms...all of a sudden...dizziness, fatigue, vision problems, tingling, muscle weakness...and yeah, the the muscle and joint paint...

[Lulu54]

Hi, and welcome back.  The joint pain and the muscle pain are usually not associated with MS.  It does sound like you need a really good evaluation to determine your problem.  Whatever you do, don't give up on finding answers.  You deserve to know what's going on with your body and if you need treatment.

L

[someqs17]

Also, I was doing better for a week, and my muscle and joint pain reimmerged overnight and have continued to today.  I also had really bad lower back pain, and this weird quivering feeling in my lower leg. I'm still very concerned about MS, but I'm afraid that my symptoms haven't been happening long enough to be able to get a solid dx? As I said above, I had an MRI done that was negative, however my symptoms only just started on Oct 11. Should I wait to pursue a neurologist or do it now?

[someqs17]

I actually wanted to follow up with a question. While all my other symptoms are better, in the last week or two I've noticed significant issues with my vision. I noticed it first while watching TV...the movement on the TV sort of wacked out my eyes. I also find it easier to watch TV in the dark, though not by much. Even tonight, I was at dinner and I felt like my eyes were spazzing out and it made me dizzy -- though there was no movement happening. It helps to put my hands over my face but it's worrisome.

Does this seem like the nystagmus thats associated with MS? It doesn't seem like the optic neuritis. I"m going to try to go to an eye dr tomorrow.

[someqs17]

Hey,

My MRI was normal/negative. They called and said "it's normal so no MS." I definitely feel better that it was negative, but know I can't 100% rule it out. Since I've been feeling better for the last week, I am going to see how I feel and if it continues, I'll pursue things further.

[LisaJF]

Well, your PCP seems very proficient and is empathetic as well.  Kudos to you!

Yes, please let us know how you're doing even with the MRI being clean or not.  We are here if you need us!

Lisa

[someqs17]

Hi Lisa,

The doctor I saw this time is actually a really good doctor. The person I saw last time isn't my regular MD, but was some random NP who was terrible and didn't take me seriously. I will never be seeing her again!

I told the dr my symptoms and he mentioned it could be rheumatoid related. He said he was going to test for everything that could cause the symptoms -- all sorts of vitamin deficiencies, tested my muscle enzymes, tested for Lymes, Lupus (I think), Rheumatoid Factor, Sweets Syndrome and probably a ton of other stuff that I don't even know about. He said he was checking for everything possible, and I believe it knowing him. He is good like that. He also gave me a script for an MRI on my brain and spinal cord to check for MS.

When I was at the dr's office, he checked my eyes and my muscles (had me push hands, feet, etc against him) and he said that all looked good. He said MS is unlikely but he understands I want to rule it out.

Everything came back OK on the blood, and he said sometimes he sees people get muscle and joint pain at the change of the season, and that it's self limiting. I wasn't sure what he was talking about.

The symptoms were most profound for about a 2 week period, and then for the last 4-5 days they've been almost completely gone, except for today because I'm having pain in my arm muscle.

I'm still pretty worried about MS-- maybe even more so now that the blood tests didn't show anything -- so I'm glad I'm getting that MRI done tomorrow.

The symptoms I have include muscle pain (the muscle varies -- but recently its been a lot in the arms whereas it started in the legs), dizziness on and off (which was the first symptom I had and has been better), random muscle weakness, tingling in arms and legs (varies - not just one side), and I feel like my vision has been weird. That may be because I'm worried about MS, but I feel like when I watch TV that sometimes my eyes freak out and can't focus correctly. There's no pain or anything like that. The doctor thought that was vague.

Anyway, I'lll def let you know about the MRI!

[LisaJF]

I'm glad you kept onward and being your own advocate.  I will be curious to know what your doctor says about what's going on with you.  Did he give you any other viable explanation as to why you're having these symptoms?

Keep track of them too.  Write it down, how long it lasts (ie: 5 hours to 24 hours to 3 days), what is happening (ie: left leg paresthesias (or numb/tingling/burning/vibration/feeling cold water etc., blurriness, dizzy, etc.)

Are you still getting these symptoms?

I am wondering, what is "everything" to your doctor? What laboratory tests did he do?

Yes, please let us know either way (show or no show) how things went ok?

Lisa

[someqs17]

Hi all,

I got blood work done and they checked for everything. Everything was normal. I have an MRI scheduled for tomorrow. My dr. said MS is unlikely, but he understands I want to rule it out.

I am going for an MRI tomorrow of my brain and spine. I will follow up with you all and let you konw if it shows anything.

[Lulu54]

I'm not a medical expert of any sort - just another person with MS.  I hope you can enjoy some of your time in paradise on that island and be sure to followup with the doctor when you get back to the mainland.  It does sound like you need a thorough checkup and it would be great if you can get it from some other doctor than this one!

[someqs17]

Hi Lulu,

Thanks for adding your thoughts. I am actually away on vacation now and am not doing too bad. The pains have been a bit better, but recently it has been worse in my arms...weakness and some muscle pain...and it is on both sides.

The fatigue and dizziness is on and off...some days I'm totally fine and others not. It really is the arm/leg pain, joint pain, and muscle weakness that has me most worried. I'm going to a doctor as soon as I return home.

I'm glad you don't think it's MS...I hope you are right! Then again, it might be something else not so great either.

I'll definitely follow up and let you know what the doctor says.

[Lulu54]

Hi and let me add my welcome.

As I read your story it also irritates me that you doc was so flippant about looking for the cause of your problems and not at all concerned about investigating further. Something obviously is going on with you, and your concern should be taken seriously.

I'm no medical expert, but as I read your concerns, it is not sounding like MS to me.  The fact that you have pain in your joints (knees) makes me think that.  MS is a disease of the central nervous system.  There are other autoimmune diseases that would affect the joints.

Even though it is possible to have presentation of MS symptoms bilaterarlly , it usually doesn't happen that way - to have both legs affected the same would mean you have identical lesions corresponding to both sides of your body.  

I hear your concern about MS rapidly advancing and if you go away on your vacation, you might get dramatically worse.  Again, it usually doesn't happen that way.  I hope you can take the vacation, set aside these worries for the time, and then go back to looking for answers when you return.

Lulu

[someqs17]

Thanks Lisa...yeah, and now I've been experiencing really strong muscle aches in my legs, along with pain in my knees...as well as muscle weakness. This certainly isn't looking good! :(