Overwhelmed with the "what if" thoughts.

Hello.

I’ve never posted to a forum before but feel like it could help shed some light on my thoughts of worry. I am a mother of 3 and am from the USA. We’ve lived here, in the UK, for two and a half years. My husband is currently working on a Ph.D. All this to say, I am not very familiar with the NHS.

For the past year I have had some bizzare neurological symptoms that were initially chalked up to low iron levels ( a ferritin of 13) Before I was diagnosed with low iron these were my symptoms:

*Cold patches(on my foot, forearm, and thigh)
*Muscle twitching that occurred all over
*Burning sensations over a large part of my body
*Elevated heart rate when I went up the stairs
*Burning thighs anytime I walked up a hill or climbed stairs
*Buzzing in hands, like I swallowed a cell phone switched to vibrate.
*Weakness in my left hand when writing or typing

When I was diagnosed with low ferritin it made all the sense in the world. Even though my iron levels weren’t at a “severe iron deficient” stage, my symptoms were. Thinking that was a little odd, I was relieved it was nothing more. I started on ferrous sulphate and things slowly seemed to get better.

A few months later, however, I noticed that when I finished a run, got out of a hot shower, or was in a hot car the tip of my nose would tingle. My nose never felt numb but would just tingle for a few minutes. I didn’t really think too much of it but a few months after that I noticed the back of my left shoulder blade would go tingly and would sometimes follow up my neck. I began to notice more tingling on my face and hands but was never with numbness. These sensations were more frequent when I was stressed, reprimanding the kids, or out on a run. My speech went a little funny for a few days too. I was having a hard time saying my S’s and I had to think of what I was going to say before I said it. I had many moments of thinking I was going crazy. None of this made sense. I started cutting the tags out of my t-shirts hoping that would somehow fix the annoying and slightly painful sensations on my shoulder. I didn’t go see a GP until recently when I was running up a hill and lost some vision in my left eye. It was as if there was a blank patch right in front of me. This freaked me out. Although it only lasted a few minutes and hasn’t happened again since, I’m really starting to worry.

I went back to the GP and told her all my symptoms, which I could tell, she thought I was a little koo koo. The GP took more blood and all my tests came back normal. My ferritin level was 34 and I was told by the GP that this level would not cause any tingling sensations nor any of my other symptoms. When I asked what this could be she just shrugged. She said it was probably nothing to worry about. I said, “great I hope it’s nothing to worry about. Would you mind referring me to a neurologist?”

I have my first neurology appt. on Saturday in Edinburgh. To be honest, I’m really nervous. I don’t know what to expect. I’ve had an MRI but that was10 years ago because of vertigo. The MRI was normal. I had some right frontal lobe atrophy probably due to an injury I had when I was little. I also had a cyst in my pineal glad but no biggie.

I should tell you that four years ago I went to see a GP because I had tingling on the soles of my feet. It felt like I was constantly walking on sand. With that, I had this incredibly odd feeling of being detached with the world around, like I was in a dream state. It was so weird. After about a month both symptoms went away. My GP thought I was just worn down. All my blood result were normal.

I don’t know what I’m hoping to gain by posting? Perhaps just some encouragement. I feel drained by the “what if” thoughts. I, like everyone else, want to be strong and fit. I’m scared that this may be something.

Thanks for reading. Your words are welcomed.

Hello and welcome

It’s not really possible to answer any of your "what if"s because there are so many conditions with similar symptoms, but I do think that you’re on the right path by seeing a neurologist.

The worsening of symptoms when you’re hot may be Uhthoff’s sign. I get the blurred patch in my vision too sometimes and it’s a sure sign that I’ve overdone things. Keeping cool and well hydrated helps to prevent it.

I’ll copy and paste a thing I did ages ago about first appointments. It’s just a suggestion of course, but it’s usually a good idea to be well prepared - neuros don’t have a lot of time, so making the most of it is always a good idea.

Try avoid thinking too much about the what if questions - it won’t change anything and it will only add to your worries. Take it one step at a time. I hope it goes well on Saturday :slight_smile:

Karen x

These are the things that I think help at a first consultation:

No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)

  • Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.

  • Take a (short) list of questions if you have any.

  • Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.

No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.

No.3: Be honest. Do not exaggerate and do not play things down.

No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.

No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.

There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.

Good luck on Saturday Bettylou, Teresa xx

Thank you, Karen and Teresa. Karen, this is some very helpful information that I’ll use in my appointment. I really appreciate you taking the time to respond. xx