Could it be MS?

Posted by mkbc @mkbc, Jun 5 10:51am

27 year old female. I’ve been feeling like I’m going crazy for the last 4-5 years. Especially lately. I’ve went to gp doctors with complaints of something wrong several times over the last couple years. Referred to 2 neurologists. GP says it’s anxiety or migraines, maybe hormones. First neurologist says it’s not anxiety or migraines and I seem fine. Second neurologist a year later says they have no idea, could be caused by a vitamin D deficiency but they didn’t look into it. 2 MRIs done. Second neurologist said their first thought was MS but they looked for it and saw no signs. Actually told me I could waste my money if I want but I likely won’t get answers. Go to OB/GYN, not a hormone problem.

Here’s what going on: I have episodes of symptoms that last for a while. Of course when I finally go to a doctor they go away and stay away for a while and then start again. Symptoms have mostly been different each time but have included random sharp pains all over my head that last for seconds. Pain in my right temple that last for several minutes. Tingling/numbness in face/ jaw. Tingling or numbness in limbs, hands, feet. Random lighting feeling in spine, especially if I’m arched forward, only on occasion. Moments of “broken” vision, blurry/empty spots in vision that clears up after 20 minutes (this was explained away as an optical migraine). Lately it’s been random moments of dizziness that seem to hit out of nowhere. Moments where my legs feel heavy like I’m going to fall over or I feel like I’m leaning to one side, but I’m not and I don’t. Admittedly, I have noticed I can usually pull myself out of the feeling of I’m going to fall over when I walk. For example, I get a fatigued/dizzy feeling like I’m going to fall over and I feel like I need to sit down or hold on to something to stabilize myself. But if I sing a song in my head, I can typically walk to where I need to no problem.

I know this sounds crazy. I feel crazy and all the doctors make me feel crazy. Could it just be anxiety? Or could something actually be wrong and it’s giving me anxiety? I recently started looking more into MS and I’m really worried I’m experiencing early symptoms but I feel like no one takes me seriously.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@taosmary interesting: I also have low blood cell count and high MCV. I have anemia on my record, due to kidney issues, but the symptoms I have resemble yours. Hmmm.

My doctors don't seem to notice these consistently abnormal blood tests and they are low or high enough for me to take notice. I am going to ask.

I take B12 and folate every day but tests are still off.

REPLY

Mkcb I'm sorry to hear your going through this,I hope they sort it out x

REPLY
@windyshores

@taosmary interesting: I also have low blood cell count and high MCV. I have anemia on my record, due to kidney issues, but the symptoms I have resemble yours. Hmmm.

My doctors don't seem to notice these consistently abnormal blood tests and they are low or high enough for me to take notice. I am going to ask.

I take B12 and folate every day but tests are still off.

Jump to this post

Do you take sublingual B12? I was taking pills, but apparently not absorbing it and had to switch back to sublingual. And, at a high dose. Doctor said 1000 mcg per day! Not sure how long I’ll take that dose.

REPLY
@celia16

Do you take sublingual B12? I was taking pills, but apparently not absorbing it and had to switch back to sublingual. And, at a high dose. Doctor said 1000 mcg per day! Not sure how long I’ll take that dose.

Jump to this post

@celia16 I"ll ask my doc about sublingual. But I have to be careful with kidneys. Sometimes we are caught between a rock and a hard place!

REPLY
@windyshores

@celia16 I"ll ask my doc about sublingual. But I have to be careful with kidneys. Sometimes we are caught between a rock and a hard place!

Jump to this post

Oh yes. It’s true. That’s why I hold my breath when thinking of my autoimmune issues. I have them. They run in my family. As a type 1 diabetic, having to take steroids would be challenging. I pray it doesn’t come to that.

REPLY
@celia16

Oh yes. It’s true. That’s why I hold my breath when thinking of my autoimmune issues. I have them. They run in my family. As a type 1 diabetic, having to take steroids would be challenging. I pray it doesn’t come to that.

Jump to this post

@celia16 my kid has had type 1 for 30 years so I get it. Steroids require triple insulin and getting off is dicey!

REPLY
@windyshores

@taosmary interesting: I also have low blood cell count and high MCV. I have anemia on my record, due to kidney issues, but the symptoms I have resemble yours. Hmmm.

My doctors don't seem to notice these consistently abnormal blood tests and they are low or high enough for me to take notice. I am going to ask.

I take B12 and folate every day but tests are still off.

Jump to this post

Check out the support groups on Facebook. “ Pernicious Anemia & B12 Deficiency Support” is the best one I’ve found to explain how PA works and is diagnosed. One test—intrinsic cell antibodies—showed that my guts cannot use oral B’s. They just circulate in the blood. Tests seem low normal, but symptoms persist. The only treatment is B12 injections for life, along with supplemental cofactors that allow it to be used.
I also have kidney disease, and heart and autoimmune problems, but injections help. Best wishes for you!

REPLY
@taosmary

Check out the support groups on Facebook. “ Pernicious Anemia & B12 Deficiency Support” is the best one I’ve found to explain how PA works and is diagnosed. One test—intrinsic cell antibodies—showed that my guts cannot use oral B’s. They just circulate in the blood. Tests seem low normal, but symptoms persist. The only treatment is B12 injections for life, along with supplemental cofactors that allow it to be used.
I also have kidney disease, and heart and autoimmune problems, but injections help. Best wishes for you!

Jump to this post

I am awaiting blood test results for inartistic cell antibodies now. Neurologist suspects my prior deficiency caused my symptoms. I’m currently on sublingual B12. I have no problem with regular injections.

REPLY

I have had some if your symptoms last two years. First I was seeing white shapes looked like a kidney when I closed my eyes. They said is migraine. I have had blurry left eye and feel weird in my head and they said maybe is optical migraine but do MRI. I did not. I haven't had these episodes for 7 months, but two wks ago I was shopping and felt left eye little go blurry for two seconds. It can be stress and anxiety related. PD said to monitor if happens again do MRI. I just hate having all the MRI contrast in my body.

Maybe try to relax, take some Lavendar capsules. It does help ,e w anxiety and stress and see if things improve.

REPLY
@rwinney

You're welcome

Jump to this post

It could be long covid, but hard to diagnose. Doctors don’t want to hear it.

REPLY
Please sign in or register to post a reply.