Dr Said might have MS

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zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/14/2015 4:09 PM (GMT -6)   
Hello,
I am not diagnosed and not sure if I ever will be but here it goes. I know you are not Drs. and cannot give me a diagnosis but I was hoping for your experience and thoughts on the matter.
It started in Oct when I had a minor surgery. I was to go back to work after a week. I wasn't feeling well so I stayed off an additional week. I went to the Dr complaining of weakness in my hips and thighs as if I was going to fall. I would even get a little shaky kind of like when you wait to long to eat. I was also not feeling like myself and I was really tired. They did an ANA panel which came back positive so they thought maybe lupus. Had blood work for that and that came back negative, RA neg and so on. I have had a history with neck pain which I think caused headaches so they sent me to a neurologist. Had a MRI and it came back with at least 8 discrete foci of periventricular and subcortical white matter signal hyperintensity on FALIR images. Dr said might be MS but I do not present as a typical MS patient.
My symptoms come and go. The only ones that have been consistent are the fatigue and finger swelling and pain in the fingers. I Also have a toe that just feels odd and numb. I have had really bad GERD as well.I do get joint pains. I have had a vibrating feeling on my leg that I thought was my cell phone ( no Phone), numbness and tingling in lower back that goes down leg. Weird deep itch sensation in thigh and no amount of scratching seems to relieve it, then it turns into a bruise. Most recent is my face burns like I have a sunburn but nothing is there. It is not real bad but a real nuisance. I also get tremendous amounts of hot flashes and night sweats and I do believe I am done with menopause before age 50. Now they thought I might also have Parvovirus B19 and put me on steroids. I am now done with those as of Sunday. Sunday I became extremely fatigued and my arms and legs starting getting that weak feeling again. Here it is Tues and my face still burns, I am extremely tired, weak and shaky.
Any thoughts would greatly be appreciated.

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/14/2015 4:12 PM (GMT -6)   
I also forgot to mention I seem to have word finding difficulty, memory issues and more easily confused. Again these tend to come and go but it is quite disturbing.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 4/14/2015 5:06 PM (GMT -6)   
I was diagnosed in 2010. The sunburn you feel on your face...is it on one side or all over? I have a symptom called trigeminal neuralgia. It is a nerve pain that typically is felt on the right side of the face. I have said it feels like a sunburn before, but the best example I can give is it feels like my skin has been removed there. I also feel it down my right arm. I try to keep the areas covered as much as possible (very hard to do with the face) as wind aggravates it. Even when I do cover my arm, it feels like the shirt is going to stick to my moist flesh--but of course there is skin there so it doesn't.

I've also experienced the leg vibrations--I can't tell you how many times I've reached for a vibrating cell phone that is just not there.

I almost always feel fatigued (as if I just got done with a weight-lifting workout) but I've found I can push through it if I have to. The hardest part is getting out of bed.

I have full body numbness, but other than the burning sensation on my arm and face, I am pain-free. I am so thankful for that. I hope your pain is treatable. Many MS patients smoke marijuana for pain relief. I tried it once and it's not for me, lol! I have no problem with others that get relief using it though.

Cognitive difficulty is common in MS. I used to be a public speaker. I am too afraid to do it now because sometimes my brain just gets stuck. It's like I know the word I want to say--I just can't get it out of my mouth. I've noticed I speak at a much slower pace then before. It's like I have trouble getting the words out of my mouth. Not to mention that talking gets me very winded! If I speak more than a few sentences, I need to catch my breath. It can be very frustrating.

From what you have posted, I would think MS is a definite possibility. However, it can take a VERY long time to get diagnosed. the doctors will try to eliminate everything else it could possibly be before diagnosing MS. I was "lucky"; I had over 40 lesions in my first MRI and they were in a pattern that is very consistent with MS. I went through all the tests and was diagnosed in about 3 months. That is very quick for an MS diagnosis.

The doctors may decide to put you on an MS treatment program. Most of them involve injections that you can self administer.

Did the steroid treatment help your symptoms? It has never helped me but I've heard it helps some people recover from relapses faster. MS "attacks" cause inflammation and steroids help fight immflamation...so it could help you recover faster. It can't cure you, but it may help your body heal faster.

Anyway, keep your head up! Not knowing is the worst. Once you get a diagnosis you can commit to a treatment strategy.

A frequent poster on here will tell you to check your diet. If you are not eating healthy, I suggest you start now. Even if it doesn't cure you, it will make you able to fight it more effectively. The body has amazing healing powers...if it is given the right tools to work :-)

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/14/2015 5:56 PM (GMT -6)   
HI Bad Mojo
The burning on my face first started out on my lips and under my nose. and has since moved to most of my face . but the worse is still under my nose.

The pain I get is primarily in the joints and lower back. Most of the time I can deal with it but occasionally I need to take a pain pill. They do have me on Cymbalta but that has little effect on the joints. My lf baby toe gets pretty painful and my index and pinky finger on my right.

The cognitive issues are really difficult to deal with. I know what you mean, I know the word but can't seem to get it out and then my kids are saying come on get it out! It is very frustrating so I too just remain quiet. I do tend to get a little anxious now when driving the freeway and I am not too familiar with where I am going. The other day I was coming home from work but was stopping to meet my mom before I went home. I took a different route which I was just told how to go and I have done it before, but when I was in the mist of completing the path I got confused and flustered. I had to get off the freeway, relax and rethink the whole process. I have done this several times in the past month.

My first MRI had those 8 lesion which I was not expecting and neither was my neuro. She will take another in 6 mos. We have no history of MS in family that we are aware of, but we do have a lot of Autoimmune disorders. I have Graves and we have lupus, RA, hashimotos and poly myalgia.

They put me on the steroid z pac because they are thinking maybe having PVB19. The steroids helped with some of the joint pain. Not so much with the face buring or the little baby toe. I don't feel a whole lot better. Maybe I would need to be on it longer but I don't like steroids. It did increase my appetite. They did say my SED and CRP rate is elevated so I am hoping it helped with that.

I am looking into eating a better diet. It can't hurt that is for sure.

Thanks for your response. Hope you are currently in a good place.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 4/14/2015 7:21 PM (GMT -6)   
I used to be on Cymbalta. I feel like I've been prescribed almost every drug out there, lol. However, if I do not notice an improvement after a few months, I stop taking it. Be careful coming off Cymbalta--do not go cold turkey. You must wean yourself off it or the withdrawals can be terrible.

At some point you will likely be asked to do a lumbar puncture, aka, a spinal tap. Everyone experiences pain differently so I won't say its painless, but don't sweat it. It sounds worse than it is.

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 4/15/2015 11:18 AM (GMT -6)   
Zulily, I am diagnosed with multiple sclerosis & have some of the same symptoms as you (of course doesn't mean you also have it.) You mentioned a weak shaky feeling....mine feels more of a floaty feeling...it comes and goes, and has been less often the longer I have been on Copaxone injections. Neurologist couldn't explain it. I had extreme fatigue in the beginning, but that has also gotten better over time being on the Copaxone. I have left sided numbness ALL the time, but especially after going for a walk-- the toes on my right foot will go completely numb--sometimes staying that way for a day or so before they come out of it. I will also get numbness in my right leg after too much exercise, but it eventually subsides. I have also experienced the deep itching that will drive you crazy!! It was both of my shins & I would itch so bad I couldn't sleep...the only thing I could do was stand in the bathtub & run freezing water over them until they went numb. I am sure no doctor would advise to do this...I'm sure that it's bad for your skin, but desperate times called for desperate measures LOL It's funny you & Bad Mojo both mentioned the cell phone vibrating sensation....I have just recently felt this but it's around my left shoulder like where a seatbelt would hit. That describes it to a T though...but I never have a cell phone there! I have 4 lesions---2 originals that put me in the hospital for 3 days of steroids, and 2 more before my Copaxone had enough time to begin working. Since then I have had no new ones :) Best of luck to you!
***********************************
Diagnosed with MS Feb 2014
Copaxone injections Mar 2014
Pars planitis both eyes Nov 2014

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/15/2015 6:19 PM (GMT -6)   
Today I have had some weird issues. Out of nowhere my ears seemed to plug up and my hearing was not efficient. That lasted for about 30 minutes. during that time I felt very heavy and weak in the arms and legs and developed a headache and had a weird sensation in my head kindof light and heavy all together.. When I would get up to do something I would get out of breath and it would feel like my heart was beating hard and fast. The sensations in my fingers feel decreased not real numb just strange. Is this normal?

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/15/2015 8:35 PM (GMT -6)   
Voodoo doll did you have issues before landing in the hospital? Do you have a family history? I was stunned just knowing of the possibility of having MS. Since I have no actual diagnosis I am sure there are other causes of lesions so I am sure they will continue to test. It is interesting though that when I look back I have had different odd issues that I have written off to age, or other things and never put lot of thought to it now I have been paying attention to every little thing and not so sure this is good either. This whole experience is a crazy rollercoaster.
I am glad you are doing better.

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 4/16/2015 9:34 AM (GMT -6)   
The only weird thing I had happen was probably 10 years ago or so my left side went completely numb out of nowhere...and I mean completely. When I touched my left arm with my right it felt like I was touching someone else. Right after, I had a horrible migraine headache *which I have a history of. Numbness went away after the migraine went away so my doctor said he was saying it was a side effect of the migraine because I was young & healthy. I have no trace of MS in my family history that I am aware of. Diagnosis was an extreme shocker. My symptoms started in January of 2014---first my left hand went numb, then next day it was my left arm & hand, next day side and leg....then I went to ER. Catscan results prompted the MRI which showed I had an active lesion on my medulla & older one on my cervical spine. They ruled out heart by running some tests on that, so that's when I got the call at work that I needed to leave immediately & check myself into the hospital for 3 days of IV steroids because the results show I have multiple sclerosis. Not the way you want to be told of a major illness, but it is what it is. I'm glad I received the diagnosis quickly.
***********************************
Diagnosed with MS Feb 2014
Copaxone injections Mar 2014
Pars planitis both eyes Nov 2014

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 4/16/2015 9:42 AM (GMT -6)   
I say "quickly" but at the time it seemed like an eternity to get the actual diagnosis. The numbness began in January & I didn't know each day how much worse the numbness was going to be or where it would spread to next. The heart tests took time to get into after my ER visit...after cleared from that the MRI was finally scheduled. That was the longest month ever...and then waiting months for the Copaxone to be in my system long enough to begin working was another stressful time. Got 2 more lesions from time began Copaxone until it has "supposedly" & "hopefully" began working to help me. I have had no new lesions as of my last MRI, but you never know if that's just by chance or if the Copaxone is actually doing its job. The constant "unknowing" even after diagnosis is draining if you let yourself dwell on it.
***********************************
Diagnosed with MS Feb 2014
Copaxone injections Mar 2014
Pars planitis both eyes Nov 2014

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/16/2015 6:13 PM (GMT -6)   
That is crazy. I am glad you got your diagnosis quickly. I don't know if I have MS. I am so focused on how I feel on a daily basis that I sometimes wonder if I am looking for things. So I have made a list of my symptoms. All I know is that I don't feel like myself. I get these weird sensations. I have noticed I get this pulse/squeeze type sensation in my head. Not pain just really odd and annoying. IDK maybe I am just crazy.lol

valleyJim
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/18/2015 11:46 AM (GMT -6)   
Hi zulily,

I got my dx in 2005 and it took me four years to get one. The mri is only one part of the puzzle. They literally try to rule out every other possibility, that is what took so long for me. I had to find an ms specialist to get a dx.

One thing to look for -- the disease that is most often wrongly dx'd as ms is Lyme disease. Be forewarned though that the test for lyme has to be run multiple times to get a correct picture.

Having said that -- you can find an ms specialist close to you at

www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider

Good luck!
Jim

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/20/2015 9:52 PM (GMT -6)   
Thank you Jim. We talked a little about Lyme disease but they don't feel that is what it is. They said I did test positive for a Human parvovirus B19. (Fifth's Disease in children). It is a little confusing because my IGG was positive but the IGM was negative. my understanding is that if IGG is pos but IGM is neg this means that I am immune so I am not understanding how that concludes that I have an active infection. I guess we will see.

Laura

valleyJim
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/21/2015 10:11 AM (GMT -6)   
I know when I started on this journey that I am on now, the neuro sent me for blood tests and they pulled 14 (yes, I counted because I was so surprised) tubes of blood out of me. He wanted me tested for everything from drug use to the sedimentation rate of my blood.

The neuro also did a lumbar puncture (spinal tap) as part of the puzzle.

So, if they are seriously thinking that is may be ms please be prepared for a long road to just getting a diagnosis. I would also suggest that if your insurance will allow it, check the link I posted and get with an ms specialist. That was the best thing that I ever did and do not regret a minute of it.

Either way, always remember that whether you need advice, have questions or just need someone to vent to, we will be here for you. :)

Jim

zulily
Regular Member


Date Joined Jan 2015
Total Posts : 49
   Posted 4/21/2015 8:32 PM (GMT -6)   
Jim what were your first symptoms?

valleyJim
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/22/2015 8:21 AM (GMT -6)   
My first symptom was actually optic neuritis. I lost the vision in my left eye for about 6 months.

My understanding is very often ON is one of the first symptoms but it is different for everyone.
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