How do I address my concerns with my doctor regarding MS symptoms?

[purplepolkadot]

I am in my early 30's, and I have had about 4-5 episodes lasting about a week or two in the last couple of years, with some of the symptoms lasting beyond that for several months.  Several years ago, I had a regular doctor when I first started having periods of fatigue and weakness, Dr mentioned possibly doing some testing for autoimmune diseases in the future, but I moved after that and that was it. Then about 2 years ago, I went to urgent care because I was so weak, I felt like something was very wrong; I had bloodwork done, other than protein & ketones in urine and being somewhat anemic, everything came back normal. Sedimentation rate was also right on the border, but Dr said it was fine. Basically I was told to rest, eat healthy (I already do), and Dr suggested anti-depressants (which I didn't take up on, as I felt that had nothing to do with my symptoms).

I just experienced another episode a few weeks ago, and am going to see a new doctor/neurologist this next week. How do I start the conversation? I don't want to seem like I'm diagnosing myself, but I also don't want my concerns to be dismissed.

These are the symptoms I've had during my episodes:
• Fatigue – most common, lasts for several days/weeks, sometimes a few months at a time. Tired when waking up, feeling like I need more sleep, no energy or runs out very quickly.  Extremely fatigued by end of day
• Dizziness, shakiness, weakness – just a general feeling of “unstableness”. Hands shake when reaching for things, weakness in arms, legs, spinning feeling in head.
• Mood – emotional exhaustion, irritability. No desire to do things I normally really enjoy/look forward to.  Anxiety/panic about things I normally don’t worry about.
• Pain –Occasionally feel pain in wrists, elbows, ankles, hips, neck. Wake up feeling sore, especially neck, back, shoulders. Sometimes have jabs of pain that last for a few min, then go away. Can come and go repeatedly throughout day.
• Poor appetite, weight loss – nausea, weight loss. Usually lasts beyond the other symptoms. Also changes in taste sometimes (metallic taste or just tastes differently than normal)
• Memory – have a hard time figuring out simple things, like names of very familiar people, what happened recently (this morning, yesterday, etc), what day it is. Not necessary don’t remember at all, just a feeling of confusion, and have to figure things out one small step at a time.
• Vision – blurry, sometimes see two of things (usually things that are further away). Hard to see at night, things just blur together (especially when driving). Eye twitching that lasts for hours at a time. “floaties” in eyes.
Other symptoms:
• Headaches – more frequent than usual
• Skin issues – red, blotchy skin on face, neck. Rash on legs, comes and goes.
o feeling very weak when it’s warm (hot shower, warm car, etc)
o shortness of breath – feeling like I can’t take a full breath, lasts for a few minutes or hours, sometimes days
o random tingling on face, especially around mouth
o heart speeds up and beats very quickly for a few min (when resting, or just doing normal non-vigorous activities)
o feeling like my tongue is getting twisted, not being able to say a word properly
o mis-typing words on keyboard

I know it's a lot of different things, and not all of them might be related, but just wanted to give a complete picture.

[HVAC]

Your PCP can do a neurological exam. It is easy and accurate. If it is abnormal they can send you to a neurologist. It is reflexes and such but very accurate. My PCP did one on me and sent me to a neurologist right away. If it is normal then you do not have to worry about MS.
Alex

[supermum_ms]

Hi and welcome,

We had a similar question the other day, it's actually not usually a good idea for patients to be the one to bring up MS with any type of Dr, off the bat a dr will think you're self diagnosing and know you've been googling medical symptoms and or medical conditions......unfair but it puts mental health in the front of their mind because it's a common behavioral pattern for people with M/H issues like Health anxiety, Conversion disorder etc and MS and ALS are the most common medical concerns when there a mental health issue (btw i am 100% not saying that is your issue!! just giving you related information)

In some countries you can't get in to see a neurologist with out a referral from another dr, if your are able to see a neurologist with out a referral or giving a reason for needing an appointment, depending on the neurologist you might find the first visit is taken up by a full neurological assessment with not much time to have a conversation but if asked you might consider saying some of what you wrote above as your intro eg Dr mentioned possibly doing some testing for autoimmune diseases in the future and since I have had about 4-5 episodes lasting about a week or two in the last couple of years, with some of the symptoms lasting beyond that for several months I thought it was time to find out what is or isn't causing these episodes.

btw you mentioned metallic taste in your mouth which is a type of taste disorder known medically as parageusia, and that along with some of the other symptoms eg Skin issues – red, blotchy skin on face, neck. Rash on legs, comes and goes, nausea, general fatigue etc are common allergic reactions so it might be worth seeing an allergist about your experiences too.

Hope that helps.......JJ