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.

Hi Bettylou,

Glad you posted - it’s often good to write things down. Take this along to the neurologist - or a list of symptoms, when they occurred and for how long.

The neurologist will probably just ask you lots of questions, I got stabbed all over to see what I could feel - not much on hands and feet!

Ask for another MRI - the machines are so much better now.

Must stay from your list of symptoms MS is a possibility but then again they could all just be one offs.

Diagnosis usually takes years, but if he/she does suspect MS ask if you can speak to an MS nurse, they should be able to help you and this website is great for lots of good information.

Stay well and stay positive,

Jen x

Hi, mmmm, there`s a lot going on now and at other times. I do think it is right that you see a neuro. He/she may order tests such as MRI or Lumber puncture.

I imagine it will be a difficult job to diagnose you . But all you can do is let him/her do their job and see how it goes.

When you go for the appointment, take a list of symptoms and questions. Try to keep it fairly brief (although I do believe that is difficult).

let us know how it goes, yeh?

luv Pollx

Me again.

I forgot to say that if you are anything like me, the what if thoughts will continue. Its just a matter of trying to control them. I know exactly what thats like, as i still dont have a full diagnosis after 14 years!

But I have been told that I dont have MS anymore…sounds mad I know, but I spent several years being told I had a 95% diagnosis of PPMS.

luv Pollx

You are doing the right thing getting it investigated, I think. At the very least, once something starts preying on a person’s mind, it starts chipping away at peace of mind and needs dealt with. You are currently in an anxious state, and that is unpleasant, but try to think of your appointment in terms of being part of a sensible, adult plan to address an unsatisfactory situation - i.e. one in which you are losing sleep worrying about your health. With luck, there’s not much the matter. If there is something that needs further investigation, then at least you know, and sooner is almost always better. Either way, you are better off than letting those worries fester.

I hope it goes well on Saturday. (Saturday? - doesn’t sound like the NHS to me!)

Alison

x