Dr Said might have MS

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.

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

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.

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?

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.

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

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

Jim what were your first symptoms?