52 yrs. Old. I thought I had been reasonably healthy all my life, working and living. After a weekend of a "stomach bug"...I recovered from to awake Monday to return to work and found myself very weak and barely able to walk. I called my employer thinking I just would recover. But that was four months ago. Since then, I have had to quit my job and try to figure out what is happening.
A friend took me to the emergency room and after telling the doctor about my numbness and inability to walk....They did nothing.
Since then I have seen this doctor again to tell him nothing had changed...He finally ordered an MRI, he has told me MS and now waiting for a Neurologist to call me.
I have read a lot about MS.
I find it frustrating to have to go thru this waiting game. I live in small town and will have to just wait. I have read that many other people have had to do the same waiting.
The literature that I have read is the sooner the treatment is started, the better it will be with MS. I can almost feel my body reacting to the stress. I am trying not to stress....but find that difficult.
I think we all feel your pain. It is very difficult to get the ball rolling on just the diagnosis sometimes, let alone starting treatment. The good thing is that MS is generally a slow moving disease, and though you should get treatment as soon as possible, delaying it for a short while should not have huge effect on the overall course of the disease. I was very upset when I got diagnosed in September of 2016 that I could not get treatment started until January of 2017. I was never offered steroids then either. I don't think that time off a DMT (disease modifying treatment) had much of an effect, but I understand your sense of urgency.
While you wait, you have time to research treatment options, to carefully weigh the choices to see which ones have the efficacy and safety profiles you feel comfortable with. Look at how they are administered to see what you would feel comfortable with, too. Keep a log of your symptoms and keep a list of questions so you may take them to your neurologist. When you get to your neurologist, you'll be armed with more information and can make informed decisions. During this time, you can also check into what services are available in your area, local support groups, etc.
You also have us to lean on here, to ask questions or to vent. Be sure to look at the MyMSAA pages for lots of help:
Let us know how you are doing and about your treatment choice. Hang in there.
Hello again. I really appreciate the replies here. This has been debilitating so fast. I live alone and the numbness is terrible. I'm using a walker and my hands are almost useless. I have applied for disability, but that can take a year or more. I had to quit my job. I have always done physical labor. My rent is past due. It is very stressful thinking any treatment may take awhile. I'm trying to stay positive here. Thank you again. It is comforting knowing I am not alone.
It is very hard to deal with, to put it nicely. There aren't many good neurologist out there doing MS DX and treatment, I feel I have the right to say that after what I have been through! It took me 4 years to get dx'd and then jerked around by the clinic here in Oregon!
I Hope my son doesn't end up with this miserable disease, I haven't responded well to medicine so they quit trying DMD's on me!
While you are waiting, please look into applying for SSDI (Social Security Disability Income). Whether or not you are actually diagnosed with MS, it seems clear that you are disabled and not able to work.
Thank you. Yes, I have applied for sis and rr disability also since I worked for the rr for 13 years. It just takes time for any of those benefits. I have also sought help through my state (even the governor
MSAA can help you find neurologists in your area who specialize in treating MS. You can also explore the university teaching hospitals in your area, most will have a MS specialist on staff. The disease modifying medications are numerous and current advice is to begin treatment as soon as possible to slow the progression of your symptoms. Unfortunately, unless you are very very fortunate, from now on, your best advocate will be yourself. Passivity is detrimental. Stay strong. Check in with the folks here, all of whom are supportive and have a variety of experiences to share that may help you.
My first Neurologist was not an MS specialist but knew enough to identify the possibility of it being MS. Then she had a spinal tap done on me and a week later was sent to a real MS Neuro. 100% diagnosed RRMS. It took a month for everything to be put in place for Copaxone shots (the one insurance companies prefer) After 6 mos, another MR showed active lesion growth. So they took me off Copaxone. After 3 weeks the put me on Tecfidera (the second most preferred by the insurance) I was on that for close to 7 years but eventually became allergic to it. Now, Ocrevus was prescribed it is not on the insurance approval list. It took close to 3 months to get the insurance to approve (BTW, get your shingles shot, otherwise Ocrevus can trigger Shingles). So not I get an infusion of it twice a year.
Please note that my process will probably have been different than yours will be. And just because Copaxone didn't work for me, it may very well work for you. Just keep in mind that your insurance, to a large part, will be driving what meds you take. Note that to go to a med that the insurance has not approved, you will probably have to fail on two meds they did approve.
On a much lighter note, since I was on Tecfidera, I have not had a relapse, but getting too hot/overdoing it in the yard and so on brings on the symptoms of my last relapse but once I cool off and get a good nights sleep, I'm back to good again.
No matter what DMT they prescribe to you, I certainly hope the first one works for you!
NOTE: I was diagnosed as having too much stress and not enough sleep causing double vision and loss of balance off and on. Then I changed family Doctors and was seen by a neurologist the next day.
I hate it when people say, don't get stressed. We have an incurable disease! Hello!!!
The good news for most of us is once we get on our meds we level off and aren't too bad. Don't get discouraged if the first or even second medicine isn't right for you. Mine was number three. If you know who the neuro is, try calling them! You must learn to be your own advocate.
I was diagnosed about 6.5 years ago and it was quite bad at first but then got better. I've stayed pretty even. Be thankful you were diagnosed at this time because meds are getting better and better. Keep us in the loop!
From your description of your symptoms it seems pretty clear that you do not have RRMS (relapsing/remitting MS). You may have MS (primary progressive) but you may have something entirely different. Is there another avenue that you can pursue to get to a neurologist besides waiting for this one to call you back?
Try to take a deep breath and relax because stress will make the waiting seem impossible and unmanageable. Illnesses often make MS Behave as it as if it is on steroids. . Once you get to a neurologist, and he/she has a chance to do some tests on you he might be able to curb some of the side effects to are now experiencing. Much like Jes Just told you, we are happy you have found. Welcome to our extended family! Although we hate how you had to us we are glad you did. We promise to provide you with a safe place to come. And ask questions, voice concerns like you just did, or simply speak to others who truly understand.
We are close by. If the waiting becomes unbearable again, Remember, the squeaky wheel gets greased. So keep bugging your primary care doctor and the specialist office that supposed to be working you in. And most of all remember we are only a post away if you need us or if we can help do anyting. Fancy.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Follow up today
Update: No Diagnosis
Newly Diagnosed
In the process of diagnosis.
14 year old daughter starting Ocrevus
