Last reply 10 months ago
I'm so done with everything!

Well, I have my leg brace as of yesterday. I used my crutches to get into the room, then the nurse brought my brace and showed me how to put it in my shoe. I then got up and used my crutches to walk to the parallel therapy bars. I put my crutches against the wall, held onto the bars, and slowly walked with my brace on. It will definitely take time to get used to it. The nurse was watching me the whole time, especially how I was using my left leg. She asked me “Are you having weakness on your left side?”

Me: “Yes, my left leg is starting to get numb as well.”

Nurse: “I can tell. Your leg looks weaker today than last month when I first saw you.” 😔 She asked “Are you officially diagnosed, or is it still pending?”

Me: “It’s still pending. I’m to see a neurologist in October.”

Nurse: “October?! They should’ve gotten you in by now! How long have you been having these symptoms?”

Me: “Several months, if not longer. I started having severe headaches several months ago, then started losing my balance, started falling, and everything else has been happening since. My husband took me to the ER June 6th because I couldn’t walk.”

Nurse: “What’d they do there?”

Me: “A full blood panel. They checked for ANYTHING they could think of that might be causing this, but everything came back normal. That’s when the ER doctor suggested a neurological cause, and first thing he said was MS.”

Nurse: “What kinds of symptoms are you having?” So I told her everything. She said “I’m not a doctor, but from what you’ve told me, I have to agree with the ER doctor’s hunch. I really believe you have MS. Your doctor needs to get you in for an MRI now, not make you wait another 2 months. In just the 2 times I’ve seen you in the past month, you’ve gotten worse.” 😔 It sounds like I will soon end up in a brace on my left leg as well. She told me to stop by the doctor’s office (ortho office is maybe 1/4 mile from the doctor’s office, if that) and ask him to order an MRI for me right away. She said “That way, the neurologist will have the results by the time you see him in October.” I agreed with her it sounded like a good idea.

Before I left, the nurse said “I’m going to send the doctor my notes, especially my findings of your left side becoming weaker.”

I want to cry. I’m fed up with trying to walk normally making, people think there’s nothing wrong with me when in reality I’m trying to keep up with everyone and everything when my body doesn’t want to cooperate anymore! From now on, I go at my OWN pace, no one’s else’s, and if they don’t like it, TOUGH SH**!!

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10 months ago

Hello @arica_therrien, I’m sorry that you’re having such a hard time. Most of us have been through the same, and call this Limboland, which is pretty much worse than the diagnosis itself. So, you are in good company on this site.

I mean, it may not be MS, there are other conditions that can mirror these symptoms. The one thing that usually confirms a diagnosis is a lumbar puncture, which comes after blood tests and MRIs, sometimes nerve conduct tests. So, when you do see your neuro, make sure you have a copy of blood test results and the MRI scan. See if they will let you have your own copy by email, memory stick or DVD. Most importantly, take a list of possible symptoms with a dateline, but keep it as consistent as possible. Think about what you might consider to be unlined 5i ga, like urine infections, blips with eyesight, pins and needles.

Hang on in there. At least you are in the system now and we’re fortunate to have had a nurse who was on the ball. So stay strong, do what you need to get you through this time. Be extra kind to yourself and don’t feel guilty for doing so. Lots of support on this site for you, so keep us posted! X

10 months ago

@arica_therrien, the ER doctor was not wrong but although the majority are diagnosed in their 30s (your other post) there are exceptions – several on here in 50s and 60s. I was 76!! But don’t be despondent. You’ll get support on here from folks who know what it’s like in Limboland and beyond. We understand!!!

10 months ago

@vixen I will get whatever copies of test results I can. Yes I feel good having the nurse on my side, but the doctor’s office is still dragging their feet getting me abs my daughter in for our MRIs and it’s EXTREMELY frustrating. I hate Limboland. It’s hard to keep track of when my symptoms occur because it’s constant and always changing. First one symptom will show up, then another will a day or 2 later, or the same day, then the first symptom will come back, then another will show up. It’s a whirlwind! First it started with headaches several months ago, then loss of balance, falling, dizziness, and everything’s been hitting me since. It’s hard to keep track, hard to focus, and hard to process all of this.

I’m glad to have all of you here to help and understand. I’m scared of a lumbar puncture. If the doctor feels he ABSOLUTELY needs to do it, I’m forcing my husband to go with me. No way am I driving home afterwards!

10 months ago

@merfield The orthopedic’s nurse asked me how old I was. I said “I’ll be 43 in a couple weeks.” She said “You’re young.” I said “Yes, but it’s possible I’ve had this longer than they think and it just lay dormant.” She said “Yes, that’s very common.”

I won’t be despondent, but I’m sick of being rushed and forced to do 1000 things a day! I want to be able to do 1 thing at a time! It might help ease the stress.

10 months ago

That’s absolute nonsense to make you wait so long considering the severity of your symptoms! I had a similar wait time, though. At first they wanted an MRI & orthopedic specialist, the MRI showed 2 mildly herniated discs, but orthopedic Dr. said it wasn’t the problem as it wasn’t compressing a nerve. …then a epidural for the hip pain. …then physical therapy. …then blood tests to check for autoimmune issues like lupus, arthritis, etc. …then nerve conduction studies. …then a cervical spine MRI. Between every one, a visit to the doctor to review results. How frustrating!!! It took 5 months to get a diagnosis BUT my symptoms weren’t ANYWHERE NEAR AS BAD AS YOURS! Hopefully the nurse’s input will make a difference in your wait time. All the while you’re just screaming inside like, do I have to fall over and die before anything gets done?!?! The waiting is so stressful! I hope you can find something funny or interesting to read or watch on TV to keep your mind semi-occupied. That helped me a lot. Let us know how it goes & HANG ON TIGHT!

10 months ago

When I had a persistent bout of Optic Neuritis when I was pregnant (2nd trimester) they said that after delivery I should have MRIs to check for MS. The symptoms went away in 3rd trimester as they often do. It wasn’t until my daughter was 2 that I had another symptom…this time my foot wanted to stick out at a strange angle and I walked weird. This was for a week. I had an MRI shortly afterwards and MS was confirmed. At that point I realized how many strange things over the years had been diagnosed as something else. The “irritated nerve” from kick-boxing, muscle twinges, etc. etc. Jot down all unexplained things you have experienced and when. It may help build your case. Many of us were medical mysteries until formally diagnosed. Push through it and demand a diagnosis and treatment.

10 months ago

@rmdaniels Holy man, are you sure we haven’t met in a former life? Because you described my emotions to a 100%! First I had horrible headaches (still do everyday), then loss of balance, falling, dizziness, can’t remember things, losing my train-of-thought mid-sentence, numbness on my right side now spreading to my left, vision issues, my right knee locks up during the night and it’s EXTREMELY painful. Yes, it’s like “What the hell am I supposed to do, collapse in front of you before you do something??” I agree, I’m certainly hoping the nurse’s input will push the doctor to order my damn MRI.

I want to read, but now I need larger print so I don’t have to strain my eyes so much.

10 months ago

@itsmewithms I kept a journal of my symptoms before I saw my PCP. What happened to it after I gave it to the receptionist to put in my file for the doctor to read us anyone’s guess. I’ll try to make another journal for the neurologist. I have a copy of my PCP’s list of symptoms for the neurologist to review: “weakness, numbness, syncope (fainting or sudden, unexplained dizziness), and nonintractible headaches”. I was like “well, that’s only about HALF of it.” I also see a cardiologist August 28th due to my constant dizziness and my dad’s family history of heart disease.

10 months ago

Please don’t waste energy worrying about a lumbar puncture – my experience was that it was no big deal. Short, sharp pain for a few seconds then it’s done. Not as bad as the dentist IMO. xxx

10 months ago

Can relate to you, isn’t it the pits!? The more I try to walk normal the worse my gait gets so I gave that up months ago 🙁 I had my MRI’s 2 days ago, 6 months after waking up unable to walk and the past 6 months have been hell so I really feel sorry for you. Big hugs and hang in there, that day WILL come but yeah, expect the constant headshit till then x

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