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lelah33 05-12-2020 11:48 AM

This month's post about symptoms? :)
Hi, I haven't been on HB for several years, but I will feel better if I ask, as I am having health anxiety. The weird thing is, I have diagnosed myself and my children correctly a number of times, so maybe that is why I am anxious about this.

I just need to know if putting Multiple Sclerosis on my private differential diagnosis list is reasonable. If absolutely unreasonable, I will try to remove it from my mind.

I was waiting for a neurology appointment since January of this year, and it was last week. However, the clinic is not open, so all I got was a phone call with the doctor, whom I really like so far. I think I told her most of what has been going on with me, but I know I forgot some things.

Here is how this began:
- Had right ankle mri in January, because I was finding walking impossible sometimes. I was already re-diagnosed with posterior tibial tendonitis (third time in three years) two months before, but the pain was getting ridiculous at times. Mri showed that the PTT was almost resolved, and that I had early degenerative changes. Ortho referred me to a rheumatologist, who based on my ANA tests from five years ago which were equivocal, took a hip x-ray as I had a lot of pain in my groin area. Nothing outstanding, but also early degenerative changes. No rheumatoid arthritis..

- On my own, in January, I made an appointment with a locally recommended neurologist, after I had burning pain (I literally thought I had burned myself somehow, but my skin looked normal), deep itching, and then numbness for several weeks. Physical therapy seemed to do little to resolve this.

- She diagnosed me with dysesthesia, as the reason for ordering a bunch of tests. Including new ana tests, mri (with and without contrast). Also my gait has changed since last year.

- Two years ago, I had chronic appendicitis and kidneys stones. I was having so much pain in my right side for months, but when the surgeon was examining me to assess for surgery, he said that most of the pain on the right side of my "trunk" was not cause by my appendix nor the kidney stones. He said it was muscular. Recently I thought I had been feeling better for a while now in that area, but no, the neurologist helped me realize that my right side is now half-numb, and sometimes deeply itchy around the edges of my numbness (starts to the right of my belly button and goes around to just before my spine on my back.)

- I had already had calf cramping off and on for months. Mostly in the right, but sometimes in the left. I am not dehydrated (as my husband asks), because I drink so much water that I have to go to the bathroom all the time.

-Which leads to going to the bathroom. I feel I empty when I'm done, but when I stand up right after, it doesn't feel empty. I don't think I have an infection, though. No fever, etc.

- I have also felt for several months off and on that my right knee is going to give out from under me. It took me a while to figure out that after a while, most of my leg was half numb, and sometimes tingly.

-Two nights ago, the back of my thigh felt like it was being attacked by small pieces of glass, to the point of my checking to make sure there actually wasn't any down my pj bottoms.

- Last week, pain for four days/nights that was just intense down the right side of my body. I had to take strong Tylenol to get any sleep.

- I have had occasional jaw issues on the right side for a few years now. Two weeks ago, I had pain that was awful for about 15 minutes, and then it went away. It was after I had eaten something very chewy, if that caused it.

- My hands get shooting tingling every so often. Particularly my right hand.

- Sometimes my hands feel thick like I can't bend my fingers well. I have been learning violin for two years now (a childhood dream), and there was one day my online session did not go well because my fingerings were just not normal and my right arm (bow) made my bowing ridiculous. My teacher blamed it on the weather. I sounded worse than a beginner.

- My right arm feels shaky sometimes. My TSH is very nicely normal, as are my free t-4.

- When I lay down at night, I feel little muscle spasms, particularly around my knee and ankle. A couple weeks ago, I felt better muscle spasms (particularly in my calves, again right worse than left.)

- I limp, and am sometimes outright wobbly. If I walk with my leg fairly stiff and straight, with no deviation to the side, or pivoting, I do okay, but if I go out with the kids and go around the block, one loop around is about all I can do because I feel physically exhausted. When I get up from sitting or lying down, I feel kind of stiff for a while.

- near top of thigh tingles or is painful if the temperature is cold outside. Heat has always just made me feel sick. THat's why when I am outside, I wear a good sun hat.

- Last septmber I broke a rib falling off my bicycle because I felt dizzy and just lost my balance. Numb outer hip began a few weeks before this.

Also have allergy symptoms because it's spring.

I am supposed to start physical therapy again, or at least meet online with one to get some ideas of things I can do to regain strength.

So shall I eliminate MS as a possibility or keep it on my "differential"? I just need to ask.

firemom31 07-27-2020 09:28 AM

Re: This month's post about symptoms? :)
I'm certainly no expert, just someone who's 5 years into the MS journey. I can tell you that everything you described sounds like a typical day for me. My first symptom, many years before I ever thought anything was wrong, was a large numb spot on my left hip, abdomen and upper thigh. About 6 years ago, I was awakened during the night by burning pain in that area, so severe that I initially thought my bed was on fire. The other symptoms quickly followed, balance problems, several falls, muscle spasms, vision issues, indescribable exhaustion, etc. There are many, many diseases/conditions that mimic MS, and the only way to know is to see an MS specialist and either rule it out or get a diagnosis. MS is not a death sentence by any means, and there are plenty of meds available to treat symptoms and slow the progression of the disease. You were very concise in listing your symptoms, please keep us posted as you take this journey. I'm sure it will be helpful to others.

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