Could this be MS?

I'm a 22 year old female, who for the past 3 months has been having various health problems.  In June of this year I kept getting bladder infections and was eventually told by a urologist that I had interstitial cystitis.  The urologist put me on a lot of medication and nothing seemed to help.  In July I started to develop serious joint pain in my knees, fingers, ankles, and elbows.  By August the pain continued to spread into my muscles and more joints.  Now, I'm having pain in my shoulder and even in my jaw which continues to lock up.  Occassionally I'll have very brief tinglining in my hands or feet or numbness in my pinky finger which is followed by more pain.  Today I've started to have this very painful pricking pain in the tips of my fingers and toes.  The pain continually moves around my body and I've experienced it regularly in both arms, both legs, back, and neck although it tends to favor my right side.  I've also noticed that some of my muscles have started twitching slightly- my eyelid and some muscles in my legs.  It's not painful or noticable to anyone watching- just very frightening. I've also started getting some rashes on my face and upper chest that will be there for a few hours and then go away as quickly as they appeared.

The pain seems the worst in the mornings when I get out of bed and I almost seem stiff- making getting ready for work difficult.  The stiffness seems to ease up throughout the day but will flare up again at night around 7:00.  Changes in temperature or weather also seem to make the symptoms worse.  

I've never had any health problems before and nothing like this has ever happened to anyone in my family.  I was absolutely terrified that I might have ms, but my doctor thinks that that is unlikely.  Could this be Fibromyalgia?  He's currently running blood tests, but can't find any inflammation- however he says that inflammation may take awhile to show up.  Does anyone have any suggestions as to what this might be?  I'm really frightened and would be grateful for any help!  Thank you!

[bearsmum]

Hello and welcome.  We are like one big family here and will give you any support that you need.
I am currently waiting for final diagnosis on MS, and I have been having weird things happening for many years with all sorts of different diagnosis only to be later on proven incorrect.  It really has been a merry-go-round for me.

Some of the symptoms you are having I can relate to but I really think that you should be getting a referral to a Neurologist, problem is in finding a good neuro who knows what he is talking about.

Good luck and keep in touch and let us know of your progress.
All the very best
bearsmum

[JonM]

I have MS but am not a MD.  What you're describing does not sound like MS, not even close.  Joint and Muscle pain are not early symptoms of MS.  Maybe much later after spasicity sets in, which you don't even remotely have.  

I don't know about other diseases, so keep lookin', but you don't have MS.

Good Luck - feel better!
Jon

[JonM]

You might make sure this is not Lyme disease.  Many of the symptoms you listed are similar.

Jon

[Heather3418]

I have to agree with Jon.  I too, have MS, am not a doctor, but true to what Jon said, MS does not present with joint pain.  Muscle pain can be a sign of MS spasms, but from what you are describing it doesn't sound like spasms.

I , too, would check for Lyme disease.  Ask your doctor for the most sensitive test, because Lyme can be missed easily.  Your rashes are a sign that this MIGHT be Lyme Disease.

All the best to you and please make sure you keep us updated.

Heather

[brooke131]

Thank you all so much for your input!  I've had the Lyme test, Rheumatoid factor, ANA, inflammation tests, etc. and all of them have come back negative.  I've just been desperate to find out what's been going on so I thought I'd try this board and see what everyone thought!  Thank you again and I wish you all the best!  

Brooke  

[sllowe]

Brooke,

Hi Brooke, just wanted to say hello, and I do concur w/the others.  But wanted to suggest a Rheumatologist perhaps? I'm just not sure, but this might be the way to go if you Dr. has not sent you to one yet.

I hope you get to feeling better soon and that you find out what is going on.  The tingling and prickling we can definitely relate too.  No matter what though, you will find support here - k?

Be well,
Shell

[brooke131]

Hi All,

I returned to the doctor today and he said that all of my blood tests (ANA, CRP, ESR, etc.) have come back negative and that the tests for gout and for muscle breakdown were also negative.  He believes I have fibromyalgia and is going to treat me for that.  I'm still a little concerned about the occassional numbness/burning in the tips of my fingers and toes and the muscle twitches that I have around my body.  To put my mind at ease, could you tell me what the earlier signs of MS are?  Thanks- you guys are wonderful!

[Lauri8967]

Hi Brooke -
My name is Lauri and I do not have an MS Dx, but I am Dxd with both fibro and lupus.  Your symtoms (symptoms), as mentioned above, sound FAR more rheumatological than neurological.  The slight neruo symtpms you are describing can occur in both lupus and fibro.  
Though your blood tests looking for a rheumatological disease are negative, that doesnt mean that you do not have one of these diseases.  I also had negaitve blood tests for YEARS, and was Dxd with fibro.  A year and a half ago, however, my sed rate, CRP, complement levels, etc began to become abnormal.  After a couple of really bad flares, I was fianlly Dxd and treated for lupus.  Very often in lupus, the Sxs appear before the blood work becomes abnormal.  Though some of your symptoms are vague, and can be caused by many different conditions, the fact that you have rashes in conjunction with the fatigue and pain is a hallmark symptom of lupus.  What treatement is your doc giving you for fibro?  This treatment (Im assuming nerontin or Lyrica, or a low-dose anti-depressant) can also help with your lupus symtoms (symptoms), but will not do anything for the rash.
Does your rash appear after you have been in the sun?  Do you feel sick after being in the sun?  Do you run a low-grade fever?  Sores in nose and mouth?  THese are alslo common sxs of lupus.  The basic treatment for lupus is prednisone.  You DO NOT want to start that if you do not yet have inflammation.  If you do end up having lupus, you will probably have to be on that, and you want to stay off of it as long as possible, as there are long-term side effeccts.
My advice is to keep a journal of your symptoms - when they happen, after doing what, lasting how long, etc.  This could come in handy when you see a rheumatologist down the line.  You also may want to see a dermatologist about the rashes.  A derm. can also Dx lupus, and/or could monitor your condition if and when it progresses.

You DO NOT need a positive ANA tohave lupus, though it is very rare.  However, having lupus without ANY abnormal blood work is very uncommmon.  What commonly happens is a person starts to develop swelling along with the painful joints, and subsequently, their blood work starts to show abnormalities.  
The average lupus Dx takes 3-6 years...it is a long hard road.  Keep track of your symptoms, and see your doctor routinely for bloodwork.  I wouldnt worry too much abpout your neuro symptoms.  Many people have sx like this which have no known cause.
I pray that you do not have lupus.  Though it can be managed, it can be a very disabling, painful disease.  Hopefully the fibro treatment helps your symptoms and you will feel better soon.
Good luck and let us know how you make out...
Lauri

[Quixotic1]

Hi, I would like to add here that the people who have already posted have given you some great information and advice.  As a physician with MS, I would tell you also that nothing you mentioned suggests MS.  The interstitial cystitis, plus the joint pain and rashes strongly suggest either a chronic infection like Lyme disease or an inflammatory rheumatological disease like lupus.

Please make sure you see a rheumatologist and get the full work up.  If things are negative now, be sure to be followed.  Labs change.

As far as Lyme disease, typically the test that is run for Lyme is called an ELISA test.  It has a lot of false negatives, meaning many people with the infection will have a negative ELISA.  To be more accurate, with your symptoms, I would have you request that they run a Western Blot for Lyme bands.  I would also suggest that it be run in two different, high quality labs.

I hope all this helped.  JonM and Lauri have given you some golden info and advice.

Good luck,

quix