Goosebumps

[Dotty]

Hello, please can I gatecrash this topic? MS has never crossed my mind as a possibility and I'm probably barking up the wrong tree. I was diagnosed with ME in the '90s, as well as the sudden exhaustion like there were holes in my toes and all energy was flowing out, there was walking like a drunk, slurred speech, unable to write properly, brain fog, freezing cold in summer etc etc. Also things nobody else had, I first felt goosebumps on my scalp, annoying as I couldn't see if it was actually happening. Later I'd get goosebumps snake down my arms, aha, I wasn't going mad then. And lighting type pain usually in 2 places at once, like hip and leg sharp enough to make me shout. Sometimes several stabs usually in left hip area. Since April I've had a candida infection in my ear, no pain, extreme itching. I tried different things as no doc took a swab. Finally the diagnoses. Suddenly 3 days ago I get a servere pain in the other ear! Awaiting swab results. Looked around internet found ear problems associated with MS plus these goosebumps. So I've joined really to ask what people think. I'm so sorry for all this rambling. 

[Stumbler]

Hi @Dotty ,

 

I've split your post into a new subject in its own right. It saves gate-crashing and might give you more exposure. Although having said that, things are awfully quiet around here. 

 

Anyway, we're in no position to provide you with a potential diagnosis. And I don't think you would want us to. The only person who can provide a diagnosis is a Neurologist.

 

However, having said that, the majority of your symptoms do present in MS, but they also present in various other conditions too. It's why MS is such a notoriously difficult condition to diagnose.

 

Your ME is an auto-immune condition, which does suggest that your immune system does not work properly. Therefore, any infection that activates your immune system , e.g. your ear infection, can cause existing symptoms to exacerbate. Although this exacerbation should only last until the underlying infection is cleared.

 

Hope this helps in some way.

 

 

 

 

[Marina]

Please don’t feel any need to apologise for rambling, @Dotty ! That’s what we’re here for, and I can be the biggest “rambler” of all

 

As someone who was originally diagnosed with ME many years ago, I can identify with your wondering if it might be MS. I remember looking up the symptoms of MS in a medical book (I didn’t have internet at the time), noticing how my SX might be MS, being terrified of it and consequently totally dismissing it as an idea and denying it. I then went through a period of “remission” and thought little or no more about the ME.

 

Then, a few years later, I got hit with various symptoms, some old and some new, within the space of a few months, and my first thought was: “My ME symptoms have returned!” It was only because a friend suggested that a severe headache I was having might be an aneurysm, that I was first sent to a neuro and had my first MRI of my brain, which showed lesions of demyelination and which eventually led to my DX of MS, together with my history of old and new symptoms.

 

As Stumbler has said amongst his other wisdoms, only a neuro can diagnose MS, preferably a neuro who specialises in MS; and it can be very difficult to DX and can sometimes take a couple or more years. A difference between ME and MS is that MS is diagnosed with MRIs and/or LPs but there are no diagnostic tests for ME - unless some have come along since the days I supposedly had it? ME is (or was in my day) diagnosed on symptoms alone and by ruling out various other conditions via blood tests and not via an MRI or LP.  

 

I’m not going to tell you you don’t have MS as I’ve been there, and it took several neuros before I was told I do have MS and not ME (although my neuro said it's possible I might have both). All I’m saying is that if you’re worried you might have MS and not ME, maybe you could have a chat with your GP and ask for a referral to a neuro in order to rule out MS and any other neurological condition? I wouldn't ask your GP if you might have MS, I'd use the phrase "rule out" as it then sounds less like you're trying to diagnose yourself or suggest you have MS, which doctors don't always like... Depending on what your GP is like and on your relationship with them, it might need some delicate diplomacy.

 

Please feel free to ask away about anything that might be worrying you, we’re always here to offer support

[Dotty]

@Marina Thank you very much for such information. I also have been in what I thought was either remission or recovery, which I thought was due to having a diagnoses of hypothyroidism, 2 of my daughter's have it and also were diagnosed FMS, another bizarre "thingy". They seem better on levothyroxine than they were before it. But if I "overdo" stuff I often need to sit for 2 days. 

[Dotty]

Hi @stumbler I missed seeing your post. Thank you also, I didn't know ME is an auto immune condition. I thought it was a problem brought on by extremely stressful situations, which we endured back then. I've not had ear probs before. At last I'm getting an ENT appointment (if I'm not dead from old age before) and a swab was taken of the other ear.... Glad we only have 2! I guess my immune system is dealing with it, so far taken 5 days. Not as painful now. My mother used to say " we live in hope, but die in despair" LOL

[Stumbler]

@Dotty , I may have got that a bit wrong about ME being an autoimmune condition but it does cause dysfunction of the neurological, immune, endocrine and energy metabolism systems.

 

However, hypothyroidism is an autoimmune condition.

 

Extreme stress can cause the body to have severe medical reactions, so it is best avoided or carefully managed.

 

[Marina]

In my ME days, ME was supposedly (also) brought on by a virus, hence it also being called Post Viral Syndrome at the time. Stress could also bring it on or make symptoms worse, but that also applies to many other conditions. Being fatigued with it gave it the additional name of Chronic Fatigue Syndrome. With 3 names to it, no wonder it’s confusing! Although NICE recognised ME as an illness in more recent years, there are still some doctors and neuros who don’t believe in it or who consider ME to be a diagnosis given by doctors who can’t find/think of any other condition the symptoms might be due to. Those who are sceptical might also say the same about Fibromyalgia.

 

Hypothyroidism can also share many symptoms with ME and MS. I too was DX’d with hypothyroidism prior to MS, albeit sub-clinical or euthyroid (I forget which now), and I too thought my “remission” was due to starting on thyroid (natural desiccated thyroid in my case).

 

There are many conditions that have similar symptoms to MS, some of which can be found here on our Resources section: Conditions that are similar to, linked to, or mimic MS

 

This all just goes to show how difficult it is to DX MS (or ME or Fibromyalgia). Anything else has to be ruled out first, but how do you rule out ME or Fibro when there are no diagnostic tests for them and symptoms can be similar? At least there are blood tests for thyroid, but even then only if FT3 and FT4 are tested along with TSH and this is very rarely done, which can result in people being hypothyroid but being told they’re in the “normal” range.

 

I hope you manage to sort out your ear infection soon enough

 

[Dotty]

Hi Marina, is certainly a jungle! I read some books on hypo and joined a thyroid UK group which is very useful. I told my daughter's to get their docs to do T3, T4, TSH but most importantly antibodies.  I even write to one of their docs because my daughter was so sick and they did nothing but the TSH. They eventually did the antibodies too and the doc was very shocked when they were through the roof! It's so annoying when it seems we have to find these things out and then try to get them to listen.