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Diagnosed over 12 years ago

I am 44 years old and was diagnosed in my early 30's. At the time I was diagnosed I was having problems with walking, My feet would turn inwards and it was difficult to stand. I kept falling and could not hold items that was a couple of pounds. I would drop everything. I was having numbness and tingling on my left side of my face. I would have severe cramping in my abdomen that would extend all the way through my back. It would immobilize me with pain. I would have numbness where I could not feel actual heat or cold. I went to the doctor to seek answers and they thought I had a stroke. They put me through many many tests. I can not remember all of them, my memory seems to be so bad anymore. Anyways, my MRI showed 2 lesions, is what the doctor said. I do remember her asking me to come to her office and had me sit down with her. She gave me a series of paperwork with MS at the top of the page. She proceeded to explain to me what it was. I sat there in denial. She made me an appt. to return and sent me home with a series of prescriptions she wanted to start me with. I also had to get two canes so I could walk. When I went home, I 'googled' MS.. and saw all the controversy that there was at the time stating that MS was not a real disease. I have always been leery on taking medications for anything.. I rarely took tylenol for headaches. I did not want to be diagnosed with something that I would have to explain to my family that it may or may not be real... At the time there were many doctors who did not believe that there was such a disease.

I need to explain something first before I continue. I got better. I could walk again after 6 months. I no longer had facial tingling and numbness after 2 months, my cramping still would visit me from time to time, however I dealt with it as if happened. I was able to hike again and walk with my kids. I could lift a child or a pan of food with no problem. So I dismissed the whole idea that MS was my diagnosis. Over the course of the last ten years I had cancer which involved having a total hysterectomy, being diagnosed with IBS, depression, and diverticulitis. I stopped going to the doctors all together.  I do not take medicines, I do not really know what is my fear of taking medication.

I write all of this because I am having a series of issues and have not been to the doctor in a long time. I have recently had neck surgery a year ago. I had a crushed disk in C4-C5. The doctors kept asking me did I have a car accident or a serious fall? I fall a lot however I always blame it on my weak ankles. I can not recall a fall that would have jarred my neck. Lately I have been experiencing severe weakness in my arms and hands. I am unable to carry a skillet to the stove or sink without it feeling like I am holding 50 pounds. It hurts when I try to lift something. I have been having issues with my breathing from time to time as well. My mother in law gave me her inhaler for my times when I wake up and can not breathe at all.. it feels like I swallowed my tongue. I can not talk or anything during these times. Sometimes this happens when I am awake as well. Like if I swallowed a lot of saliva or something. The inhaler helps me to get a breathe yet it hurts seriously in my throat and chest area when this happens and eventually I can breathe alright. I can not remember much anymore.. from a conversation I had with someone last week. It feels like my brain is blurred. Sometimes I can not remember how to spell something or remember the name of something that is so common. It seems to be getting worse. I am weak and tired often now.

I am concerned about going to a doctor and not getting a correct diagnosis. I feel as if I tell the doctor that I was diagnosed over 10 years ago with MS he/she is either going to look at me as if I am a nut or start all of those tests again. We are very very low income with 3 children ages 19, 16 and 11 at home. My husband is the only one that works and can not keep taking days off to take me to the doctors. We live out in the country and currently only one vehicle. I state all of this because this is what goes through my mind when I think of going to a doctor. I really do not know what I expect posting here... I was looking up muscle weakness and what exercises I can do to try to get my strength back and saw a google that led me here.

I do want to take care of myself and I suppose now after all this time I am ready to take medicines if I need to. I just do not want it to get as bad as it did 10 years ago. I do not know where to start..... I guess this is my starting point?
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Avatar universal
I agree with all those who have commented.  I was diagnosed in 1994 with relapsing remitting MS, and after diagnosis, I didn't have another episode for years.  Remember that you'll be able to find absolutely anything and everything when you look on-line.  Stick with sites and opinions from knowledgeable sites and people you can trust.  The Mayo Clinic, for example, will give you reliable info.  Find a neurologist you can trust.  I firmly believe that it doesn't really matter how qualified your medical team is if you don't trust them.  Whether you have MS or not, none of this stuff is going to go away without help.  Keep your chin up and go forward!
Helpful - 0
5112396 tn?1378017983
Going by your timeline, you are a very early victim of 'Doctor Google'. MS has NEVER been doubted to be a real disease by anyone outside of quack-ville. We'll all will carry our undeniable evidence into the autopsy room. It's there to see, can literally be touched.

Also, you were likely in the relapsing-remitting stage when diagnosed. In this case it is normal for most, if not all symptoms to resolve and go away for weeks, months, years, very occasionally decades at a time. This is normal, and isn't a case of MS itself going away. It's still there, perhaps even actively causing damage, just happily not to any parts of the central nervous system that cause symptoms.

Kyle is right. It will be a tricky task to separate out the issues from MS from the issues with your spine, but getting an exam in conjunction with giving your full medical history will be a good start. Teasing out what's what likely will involve further testing, but that's the way it is. Unfortunately things in the real world aren't like medical TV shows. If only things were resolved with crystal clarity in an hour! It's tougher than that, but I'm sure with the support of friends and family, you'll get to the bottom of this. You just need the courage to make that first step.
Helpful - 0
667078 tn?1316000935
As Kyle said we are not doctors.I feel for you I really do. I do not think you would reach out to us if you were not worried. I second the idea of seeing a MS Specialist if you can or another neurologist if that is all you have near by. I would get the records and any test results to the doctor. MS progresses with or with out symptoms. Unfortunately if you ignore it won't go away. I also have cancer. I know it is hard with medical bills but it is your quality of life. You have to ask yourself if it will be more inconvenient or expensive if you wait until the disease progresses. Do the best you can. I have had MS a long time and have very few symptoms, but any time that could change. I need a neurologist if that time comes.

Alex
Helpful - 0
1831849 tn?1383228392
Hi Gabby - Welcome to the group.

We are not doctors, just regular folks who either have MS, or think we might have MS. We can't give you medical advice, but can share the experience we have gained from living with MS.

Separating MS symptoms from those associated with you cervical disk issues is tricky. There are a lot of things in common between them. Only a doctor will be able to help you sort them out.

I'm not sure thw 10-15 years ago there was much doubt as to whether or not MS was a real disease. At that time millions of dollars were being spent researching drugs to treat MS. The research lead to the first drugs aimed at slowing down MS. If MS wasn't real the drug companies would never have spent the money. No doctor of any kind will tell you that MS is not a very real disease.

I know it seems like an impossible mission, but you have to see a doctor, preferably a neurologist that is familiar with MS. Not seeking help, and avoiding medications, will guaranty that you won't get any better. 20 years ago my first symptoms came and went. They stayed away for 15 years, but then they came back. THey went away again but this time they were back in 18 months.

MS doesn't go away for ever. It just goes on vacation every once in a while. It is not going to get better if you don't figure out a way to see a doc.

Kyle
Helpful - 0
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