Confused

Hi, I’m new here. I have not 100% been diagnosed with MS, but I want to share my story and see if I could get a little insight.

I woke up with weird pressure

It all started this past July 2018. I woke up up one morning in the beginning of July and had a weird pressure on the right side of my face. I believed it was a sinus infection. Upon getting Amoxicillin I found it wasn’t working, and it was getting worse. So I thought it was an infected tooth. I had the tooth removed and the pressure went away.

A couple days later I got a numb sensation on my left side of jaw that would come and go for a couple of days. That eventually subsided. A couple of days later it went to, I’d say, a two and a half inch strip on the back of my left bicep. I figured it was a pinched nerve because I could activate it by moving my arm certain ways. That as well subsided.

Trips to the hospital

On July 13th I got woken up to this tight constricting band pressure in my chest. I went to the hospital, and they did a bunch of tests, EKG and all. Everything came back normal except for my blood pressure which was 185 over 119, and my white blood cell count was elevated at this time to a 14.3. They sent me home. I came home, fell asleep, woke up next day, felt fine, went to bed that night, and got woken up to the same thing. I went back to the emergency room, they did more tests, everything came back normal again.

The ER told me to get a primary and get put on high blood pressure meds, which I did. I was put on 20mg of Lisinopril which I started taking. It wasn’t helping, and it ended up getting to the point where I couldn’t get off the couch. Finally that subsided. I called the doctor, and she said that that was a side effect and to continue to taking it and it will eventually subside. I continued to take it, and it never got better.

Burning sensations

So July 19th I’m getting ready to go on vacation, and I woke up and I had a burning sensation in the top of my head that went to my chest. I called the doctor, and she said this was not a side effect and if I thought it was, to stop taking medication. I was afraid due to rebound blood pressure, so I continued to take it.

I found a different primary and told her everything. She says that I was possibly having an adverse reaction to Lisinopril, so she took me off of it and started me on Losartan. I started taking Losartan and felt better. Then I started to feel like garbage again. She did tell me it was a side effect of it and continue to take it.

An actual sinus infection

So September rolls around, and I get a sinus infection. This sinus infection lasted for 3 weeks. No medications would help – seems like it made it worse. Two days after the sinus infection went away, I got this weird pressure building in the center of my head. It was there for four days. Ibuprofen wouldn’t take it away, nothing would take this pressure pain away. I went to my primary who told me it was due to my sinus infection. So I went to the ER and had a CAT scan done. They said my sinuses behind my eyes where inflamed. This pressure lasted for four days.

In these four days, I was pacing my house for nine hours a day. For whatever reason, nothing would calm me down. I told my doctor about this, and she says it was anxiety, so she prescribed me an antidepressant. I started taking it, and it made matters worse. She had me committed to an evaluation hospital for control of anxiety. While I was in there, I got the tight band pressure. It felt like I was being sucked to the ground, like I weighed 1000 lbs. I could barely hold my head up, and I just felt miserable in general.

Losing my senses

While I was in there my skin started to burn from head to toe at this point. In time I lost my senses of hunger, bladder, and bowel, as well as being able to tell how hot water was. I told my primary all this, and she referred me to a neurologist. The neurologist pretty much disregarded all of my symptoms, and said that I suffer from allergies. He was going to refuse to do an MRI until I told him about the numbness on the left side of my jaw. He had me go to an MRI to rule out the possibility of brainstem MS and right frontal lobe MS.

Upon my follow up appointment with him, my symptoms preceded to just get worse. He informed me that I did not have MS, but he could not explain my symptoms. So I found a different neurologist and told him all of my symptoms from start to finish. He ordered an MRI of my cervical spine, which came back normal. I also had blood work done for autoimmune diseases which all came back negative.

Satisfaction blocked

Since my MRI of my cervical spine, I have lost the ability of two senses – when I have to urinate, as if my bladder is non-existent, and my bowels are the same way, I cannot feel that I have to have a bowel movement. I also cannot tell if I’m hungry. I do not get Hunger Pains. I am a smoker. I have noticed that I do not get that relaxing effect from a cigarette anymore. Since it started it’s as if something is blocking that satisfaction. Not something I’m proud of, but alcohol no longer has an effect either.

He cannot explain the sensations

I am starting to develop what I believe would be optic neuritis. Every once in awhile my vision will get foggy then clears up shortly after. I have days where I feel completely normal besides the lack of bladder sensation and an appetite. Then I have other days that I feel like miserable garbage. There has been times that it feels like the right side of my body, my arm and leg, feel weak like they just float. But they are not weak, they just feel like it. I have gone through a day where I couldn’t tell if I was lifting my arms. I have told my neurologist this, and he cannot explain the sensations. He keeps telling me it’s not MS due to nonspecific symptoms, but he won’t do any other tests.

I want my life back

When I touch certain parts of my body like my forehead or arm they just don’t feel right, and that’s the one that’s hard to explain. At this time I am still mobile, and I never had a neurological issue until July. So pretty much I wanted to throw this out there to see if anybody else experienced the same symptoms and what was done about it. I also keep feeling this weird tearing sensation in the top of head on top of just feeling ill in general. I want my life back and a certain couple of sensations. My primary has referred me to a hematologist for elevated white blood cell count which I went to, and it was undiagnosed.

Any insights?

So if anyone could give me some insight on this, it would be great as to what this could be or if I’m looking past something. I’ve researched MS for countless hours and nothing adds up. I no longer feel any sort of pain on the inside of body, not my stomach or anything, which I had experienced pain for years, but it was all your normal aches and pains from what I believe.

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Comments

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  • Devin Garlit moderator
    2 weeks ago

    Hi Ctreadway, I’m afraid I don’t have a ton of insight. It’s possible to have MS without any lesions showing on an MRI, but it’s extremely rare. Spinal fluid is often tested in addition to an MRI to help determine. But if your MRI was very clean, they likely wouldn’t order it. I’m sure you are extremely frustrated, but the best advice I have is to keep searching for the right doctor and the right specialist. It is a truly awful and slow process, but eventually you will find the doctor who can help you. It is unfortunate, but it can take people a long time to find the right physician, but do not give up, always remember that you can find help, it just may take longer than you expected.

  • Ctreadway author
    2 weeks ago

    Hi
    That is what I really want them to do is a spinal tap but the dr wont respond to any of my calls or messages. I keep having these feeling sick moments not nausea but not feeling right. IV noticed that I can no longer feel nausea or even remotely vomit if I even try to make myself nothing happens. I’m afraid IV may of had ms all my life and just chocked everything off in the years past as work related and now its to late cause maybe my nerves are completly damaged as to why I cant feel bladder pressure or anything else.
    I did go to a urologist and had cysoctopy done and the results said my bladder is contracting but doesnt explain the loss of feeling.
    Its like everything on inside has been numbed by novacaine.

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