How does it feel living with MS?

[CareBayer]

I'd like to post this question to the people who have secondary or primary progressive (especially) MS. I'd like to know your symptoms, how long do they last and if they are lasting how does it feel, how you deal and cope with them, how do your family and friends interact with you, what your limitations are etc? I ask this question because I may have ms, but I dont have dx yet. I've done my fair share of surfing the net and going to doctors( muy mal, in my case) and have been wondering what other people are having to go through. Thanks.

[CareBayer]

I've been keeping track of everything. My symptoms, papers from the doc, and my personal journal based on everything I've been going through. The ER gives a summary of what they checked you for and the results. They did a CAT and chest scan, bloodwork and urine samples. The only thing they found was low potasium. The ER doctor told me my symptoms could be the result of that. They gave me some potasium meds for three days and had me come back to get it rechecked. It came back within the normal range. When the doctor came back to talk to me I told her about everything I have been going through and she said it sounded like MS and refered me to a local trama center who accepts people without insurance at a discount. What really made me think was the urgency in her voice when she told me to call the next day immediatly and she personally wanted to know the results.

The next day I called and they gave me HELL over the phone. It took me 3 hours of calling off and on to get someone on the phone. When I did they transfered me 4 different times and each time someone was very rude to me. I tried one time after that. Same thing! I just stopped.

By the middle of June my symptoms were not as bad so I thought maybe it could have been because of the potasium. Boy was I wrong. The end of June I could barely stand up due to the nausea and fatigue. Missed a lot of work, but luckily for me my boss was cool and under stood what was going on with me. I went to a different PCP than my own based on my friend who said she was good. I went, told her my symptoms and how long they were going on. I had the notebook and read it word for word. To sum it up she gave me some Ambien CR and told me to come back when I had some insurance. Even after all I asked for was some Flexeril to help with the spasms!

I've been hounding my employer for the insurance and afraid they will terminate me for something stupid. I know I cant go looking for another job because I dont know how Im going to feel from day to day and my boss has been very good to me since Ive been sick. I didnt even want them to know how bad I am due to the fact I've read about how not to disclose your suspect you may have ms in the work place. I tried to keep it a secret for a while. The nausea and fatigue kilt that. They person in human resources told me the reps for the insurance were coming in July, then he said August and now he says he doesnt know! I had the insurance but I had to drop down to part time status due to some family issues. What I didnt know at the time I could have gotten all my full time benefits starting the day after my 90 days were up.

I will check out the timeline tracker too. I live in the Cleveland, Ohio.

[Amyloo]

Just a comment on your insurance issue; I don't think an employer can decide arbitrarily (sp) when open enrollment is.  It has to do with when the policy comes up for renewal, and then by law they are obligated to offer open enrollment to eligible employees.  

I don't know the particulars of your employer and/or their health insurance contract, but I would at least check it out.  

[sllowe]

Hi there,

The unknown sure can be scary.  I understand you have no insurance, but what tests did they run in the ER? Did they document anything regarding their thoughts on MS? If it were me, I'd get my hands on the reports prepared by the doctors, so you can move forward.  Are you in the US?

You may feel better if you can start to map out a plan of action.  So, where to start? Get those records from the places you went, i.e., your primary care physician, and the ER.  Then, start a timeline of what started, and when.  Keep this list simple.  If you go to the search button (there are two, click on the one that says 'search this community') and type in timeline, you will see many posts.  Click on these posts to get examples of others timelines.  We have others on the forum who are good at looking these over and can help you shape it up.  

I'm glad you feel you can be honest w/us about taking the friends meds. You are in a situation where you've gotten desperate for help with your symptoms.  It understandable, but on the other hand, it's very important for you to be evaluated and have a Dr. decide what is going on, and you should be on.  This is doable, CareBayer.  We are very supportive, and will  help you map out a course, the best we can.

Hang in there, others will come along and provide advise on this one.  In the meantime, do the searches if you can, and when you are ready, you can create another post w/timeline in the subject line and ask for some input.

be well,
Shell

[CareBayer]

Thanks for your responce. I greatly apprechiate it. I have been dealing with MS symptoms for over 6 months now. I've been to a couple of PCP's and to the ER, but it seems like no one wants to help me because I dont have any insurance and my symptoms are what they feel could be related to MS.

My symptoms started off with my left eye twitching. I didnt think anything of it because I was stressed out. I talked to my boss at the time and she said hers did the same thing when she got stressed ( she left an important part out, she later confided in me she has MS). Then one day while I was at work I started getting really bad spasms in my legs, the next day pins and needles, burning, numbness, and muscle weakness and swelling in my hands and arms. Those symptoms come and go.

In June I started having really bad tremors, nausea and fatigue to the point where I'd have to leave work early or call off. I spent the days laying on the couch or in the bed. Nothing I did would help me. Tremors are the worst because that is the main lasting symptom that doesnt go away. My body when I am not active just rocks in a rhythem. Its not noticable from others but I can feel it.

I am at a whole total loss. My jobs ***** because I cant get insurance until open enrollment which should have been in June, but we have a new administration who is taking there good ole time. Torturing me!!! My friends have been giving me meds Flexeril for the spasms and Xanax to relax. I made this post because I want to know what I am dealing with from a personal perpective. I work in long term care and have seen young people in there late 40's to 60's with basically no body function whatsoever from MS. Its scary. I dont know what to do or where to start. The lucky part is I live in the Cleveland area so I do have access to the Cleveland Clinic.

[sllowe]

Oh, and my feelings about my MS vary from day to day, and sometimes hour to hour, depending what is going on.  But, for the most part, I try to function to my absolute best, each day, and then recognize limitations as they occur, and adjust my lifestyle accordingly.

[sllowe]

Hi there,

Welcome to the forum.  You may get limited responses if you would only like responses from those w/PPMS or SPMS.  Though we do have a few who I'm sure will chime in when they can.  Most are dx'd w/RRMS.

What has brought you to us? Your doctor suggesting MS? What have you been dealing with? There are many here that have been diagnosed, and also those who are not diagnosed, but have limitations and symptoms.  

Symptoms vary greatly from person to person, but then again they are very similar.  I'm sorry this statement probably does not help you very much, lol....but it's a huge topic.  For me, I had stroke like symptoms for about 3 1/2 months, and then I saw gradual improvements with those symptoms, and then they were replaced with new ones.  Some have subsided, and some have worsened, and some not left all together.  

Tell us a little more CareBayer, we're a great source of information and support.  I invite you to check out our health pages (top right hand corner of the page) too.  They are jam packed with information on MS.

Looking forward to helping! Thanks for coming our way.
-be well,
Shelly