Last reply 2 months ago
Here we go!

I FINALLY saw my primary physician yesterday, and he seems to agree with the ER doctor that my symptoms mimic MS. Although he did say MS usually shows up in a person’s 30s but I’ve had many patients tell me this isn’t always the case. Plus, I’ve been having symptoms for over a decade, which would put me in my 30s, but none if my doctors then ever mentioned MS.

My doctor is referring me to a renowned neurologist/neurosurgeon who specializes in MS and other neurological disorders for an immediate MRI. I’m also getting referred to a cardiologist due to my father’s family history of heart disease and the fact I keep passing out. This heat sure as hell doesn’t help! I used to love summer but now I hate it. It’s just too hot and very hard to get comfortable.

My doctor prescribed arm crutches for me and also a leg brace. I have my crutches already, but the orthopedic office is waiting for my insurance to authorize the brace. It’s a metal brace that fits inside my shoe and buckles up to my knee. Its to keep my right leg straight and stop it from turning inward.

This is definitely a lot to take in. I looked at myself in the mirror at the orthopedic’s office, wearing the brace I will get and using my crutches, and I told the nurse “I never imagined I would look like this.” 😞

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stumbler
2 months ago

@arica_therrien , your physician is a bit out of touch with MS. MS is being diagnosed earlier in people, so “in a person’s 30s” is a bit out of date.

The symptoms over the last decade were all probably considered in isolation, rather than part of a bigger picture.

But, you’re making progress now, although not in a direction that you really want to take…….


nicole_ortiz
2 months ago

For the heat issues, my best advice is drink LOTS of cold water, it will keep you cool internally which is important. I learned that the hard way. Tanning and pushing my body too hard and the next day I woke up with no feeling in my hands! They also sell cooling vests, packs, clothes, you name it!


arica_therrien
2 months ago

@stumbler yeah, that’s kind of what I thought, too, when he said “it mostly shows up in a person’s 30s”. I plan to ask the neurologist about that, when I get the phone call for the appointment. My shaking and headaches were always thought to be from stress, or “psychological”. Apparently, I’ve proven these past incompetent doctors wrong.

You’re right – this is not at at what I expected would happen to me. But at least now I’m finally staying to get the things I need. I’m worried about the MRIs. If they show up negative for MS, what will happen next? My husband and kids already think I’m faking. If the MRIs come back normal, I can just hear the “See! There’s nothing wrong with you!” from my family which will only make me feel worse than I already do.


arica_therrien
2 months ago

@nicole_ortiz I do drink water by the gallons. I’ve actually lost the taste for soda. I also found out the hard way we are not to take hot baths after I took a hot bath a couple weeks ago only to become very weak and dizzy, start shaking, and had to have my daughter help me get dressed and walk to me to the couch. I passed out 5 minutes later.


stumbler
2 months ago

@arica_therrien , please don’t worry about the MRI. It will show whatever is going on, which will be a step in the right direction, whether it’s positive or negative.

If it is MS, this is an invisible condition so your family probably won’t show much empathy as it’ll be hard for them to understand…….


arica_therrien
2 months ago

@stumbler my husband told me last night he and the kids are confused because one minute I’m using crutches, and the next, I’m walking around fine. He keeps telling me “Its all in your mind!” and asked “What the hell is going on Wyeth you??” I told him “I wish I knew. My body is giving up on me.” He said “No, you’re giving up on us. Its all in your head.” And he said it as if he finds me pathetic. I told him I force myself to walk so my right leg muscles don’t get stiff. Once I get my leg brace, I plan to try not to use my crutches as much as possible and force myself to walk with my brace. But if I have to walk a long distance, like I have to park a ways from the front of the store or fair entrance (because I’m still waiting for the doctor to complete my application for a placard to hang on my rear view mirror so I can park in handicap stalls), then I’ll use my crutches.

As for the MRI, regardless of the outcome – positive or negative – I’ll just say I have MS so I have some closure instead of living with “we don’t know”. I get enough of that from my daughter’s multitude of doctors with all her health problems.


franticwiggling
2 months ago

Hi, lots of weird stuff started to go wrong with my physically when I hit 35! It resulted in a contrast MRI, which showed I had lesions on my brain and spine. They told me it wasn’t conclusive of anything specific though, so I had to have a lumbar puncture (spinal tap), which showed oligoclonal bands in the fluid, which you only have if you have MS. The neurologist who gave me the results said ‘It looks like it’s MS, but it doesn’t conform to the usual set of symptoms, so there’s not much more I can tell you.’….WTF?!?!?! I got a new neurologist, who was fantastic. Once I had the official diagnosis, my husband was AMAZING, helping out with the household, and looking after me and the kids. The new neurologist recognised that I had extremely active relapsing remitting MS, (I’d relapse again within a month or so, before I’d recovered from the last relapse) and started me on the correct path of medications! I’ve since been through many different procedures and medicines, but the best was almentuzumab, (a type of intravenous chemo) which has stopped the constant relapses. (Fingers crossed) Keep on pushing forward as hard as you can every day, remember that when you feel like crap, IT WILL PASS, just go with it. None of this is your fault. Focus on the good things and remember that tomorrow is another day!Xxxxx


arica_therrien
2 months ago

@franticwiggling I can’t imagine being told “Well, it might be this, but we’re not sure!” I don’t blame you for being frustrated and I’m glad you found a good doctor. I’m waiting for the phone call for the appointment to see the neurologist and get going on the testing to hopefully find out what’s going on. I’m scared of a lumbar puncture because I’ve heard they hurt like hell.

As for my symptoms, most days I feel like crap, but my headaches and right leg are the most bothersome. The orthopedic office said it will take about 3 weeks to get the authorization from my insurance for my leg brace. Idk why it will take that long when they approved n’t arm crutches is 20 minutes.

But I push myself as much as I can, but within MY OWN pace. I know this is very confusing for my family, but I hope my husband will go with me to my appointments so he will have a better understanding of what to expect.


stumbler
2 months ago

@arica_therrien , there may be some useful information for your family on the attached:-

https://support.mstrust.org.uk/file/store-pdfs/Explaining-MS-to-others-WEB.pdf


arica_therrien
2 months ago

@stumbler wow, very informative article! I’ve told my husband many times “I don’t know from one day to the next how I will feel. I’m just as confused as you and the kids.” I’ll try to get my husband to read the article. Thanks!

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