Could this be the early stages of MS?

[itsinthetriforium]

I know this is a really common story, but I'm wondering if anyone can give me some advice.

For the past two years, I've been feeling more and more ill. It started off with fatigue just coming out of nowhere and flooring me for a couple of days. Also aches and pains and, lately, brain fog, tremors, clumsiness - quite minor but enough to have an effect and be noticeable.

I had an MRI two years ago and it turns out I have some slipped discs and minor osteoarthritis in my neck. A rheumatologist also diagnosed me with joint hypermobility syndrome and fibromyalgia, which I just accepted.

However recently I am not sure that this is right. Although I do have pain (and I am definitely hypermobile), this isn't what causes me the most problems. It's the fatigue and the tremors/clumsiness/brain fog. I can still do everything, but sometimes I have to concentrate extra hard on doing certain things otherwise I drop things, knock things over. The brain fog is really disconcerting, and I forgot words, can't concentrate. I can also be completely fine for weeks, and then suddenly it "comes on" and takes usually 3 - 10 days to get better.

When I read people's experiences of fibromyalgia, it doesn't really match up. As I say, I am not often in much pain and most of the pain can be explained by the discs as it is in that area.

I have started wondering whether there is something neurological going on and whether it is worth asking for it to be investigated.

Anyone's experiences would be welcome. Thanks in advance.

How old are you out of interest? To be honest, you need to see a doctor about this. If you have it or not, people on the internet can’t diagnose you. My sister has MS and cannot walk at all and lives in an adapted house and uses a wheelchair full time but doesn’t have ‘the fog’ as you describe and her mind is so sharp, so if the fog is your main issue I wouldn’t pin it on MS, but again, I don’t know you, you need to speak to a doctor.

I have all these symptoms, and have been checked, apparently not MS, I have a diagnosis of chronic fatigue

I wondered whether it was ME or chronique fatigue syndrome as well.

Could be something simple such as vitamin b12 deficiency.

Worth going to,your gp and getting blood tests done to,rule,out nameia, thyroids etc, and then to,take it from there.

I was also going to add that it sounds like vitamin b12 deficiency. I thought I was seriously ill before I got diagnosed.

B12 or D deficiencies can cause symptoms similar to yours, thyroid too. Make an appointment with your GP for bloods and an MOT.

I'm 32. I eat a reasonably good diet, including meat. I also take supplements, but I know that doesn't mean I can't be vitamin deficient.

The thing that's making me wonder whether it's something other than CFS or something like that is I have periods where I'm completely fine and can do a lot. I thought people with CFS had it consistently.

If you had headaches I would suspect migraine.

I do sometimes have pain just on one side of my scalp, which feels like a bruise. My fine motor skills on that side are affected. But no aura/feeling sick, and migraine medication doesn't do anything.

I have very similar symptoms to you and have also had MS eliminated and have a fibromyalgia diagnosis, although I have constant neck/arm/hand/back pain too.

fatigue and the tremors/clumsiness/brain fog. I can still do everything, but sometimes I have to concentrate extra hard on doing certain things otherwise I drop things, knock things over. The brain fog is really disconcerting, and I forgot words, can't concentrate. I can also be completely fine for weeks, and then suddenly it "comes on" and takes usually 3 - 10 days to get better.

I had the above symptoms before I was diagnosed with autoimmune hypothyroidism.

I would ask for another MRI and bloods, including thyroid (make sure they do more than just tsh), b12, vit d etc. Fibro can cause all the symptoms you mention but hypermobility and fibro are also labels that get slapped on the ‘we don’t know’ symptoms

CFS is constant and characterised by feeling really unwell and symptoms being worse 24-48 hours after activity

Please get your boiler and fires checked. Read about a woman who had awful symptoms and it was caused by an ill fitting heating system and fumes escaping over years from pipework. Obviously see a gp as advised above too.

Hello. I think more than likely this is a feature of joint hypermobility syndrome (also known as Hypermobile Ehlers Danlos syndrome)- which I also have. Your symptoms exactly match mine. The brain fog can be as a result of "leaky gut" which allows food to pass into the blood stream, or because any of the various co morbidities such as PoTS and MCAS. Feel free to DM me if you have any questions.

This book will help you understand. www.ehlers-danlos.com/understanding-heds-and-hsd-smith/

I will ask for blood tests, thanks. I moved house recently and the heating system was tested when we moved in so I don’t think it will be that. My weight is also normal, haven’t put on or lost any.

Momzilla, I actually have that book and it’s really good. I am 7/10 on the Beighton score but have never dislocated anything. I do think I have GHSD / HEDS but I was just getting a bit concerned about how I have “attacks” of the neurological-type symptoms while not actually having any or much physical pain. Also the fatigue and brain fog / motor skills are the most problematic things.

Are you under stress at all OP? I had a lot of the symptoms you describe but once I sorted out some stress issues, sleep issues etc it seemed to sort itself out. I don't want to be oversimplistic about it but if there are any lifestyle issues going on that might affect it e.g. severe stress, it might be worth considering if changing them might help.

I have Ehlers Danlos too and for years was diagnosed with fibromyalgia. I get brain fog, herniated discs (depending on which discs are affected this can cause tingling, numbness, clumsiness). I get very easily totally exhausted but also have days where I imagine I feel like ‘normal’ people do. When I start to exercise my thigh muscles feel like they’re burning and when I’ve finished walking my muscles sort of shake. I get headaches (often linked to upper back pain), tendinitis and all sorts of weird and wonderful symptoms. DD has it and has different symptoms to mine though some are the same.

There are lots of possible causes for what you are experiencing so you need to get to the GP and rule out the more obvious ones such as vitamin deficiency, thyroid problems .

It sounds like even if you don’t have Ehlers Danlos Syndrome you do have hypermobility Syndrome. That means your muscles will have to work much harder than normal to support your joints and that alone can make you feel fatigued. It can also cause brain fog, clumsiness and will be more noticeable after you’ve been physically active and feel lots better after you’ve rested up. You could have both hypermobility and vitamin deficiency for example rather than MS. I remember when I was in my 20s feeling sure I had MS because I had spells of feeling numbness, exhaustion, confusion etc.

I have MS. Only a medical professional can diagnose you.

The problem diagnosing MS is every sinle person with is different, its called the snowflake disease in some circles. I say that as someone with MS living a relatively normal life. My issues are different to what you describe but that does or doesnt mean you dr dont - as a pp you could have fibro or something else. See your Dr for further tests 0 good luck

Just to be clear, I’m not asking anyone to diagnose me. I just wanted an idea of whether it was worth going back to the doctor. It’s tricky because, as pp have said, a lot of the symptoms can be explained by EDS/GSHD

Snowflake disease?! Tell that to my mate who’s rapidly declining!

Please see a doctor, OP, you cannot expect medical diagnoses or reassurance from the Internet, although for what it’s worth, I’ve not heard about brain fog from my friend.

@Maelstrop sorry to hear about your mate - I live in fear that my future may go that way - sadly no one can predict how MS will progress. They refer to it as a snowflake as no one patient has the same issues like snowflakes.

@Pericombobulations Oh I see, I thought it was in reference to the snowflake generation.

I’m devastated for my friend. After 8 years of trying, she finally had her first child. Months later, the symptoms started. She’s currently having pressurised air on a vent and is increasingly relaxant on her wheelchair. Life is so bloody unfair.

I just wanted an idea of whether it was worth going back to the doctor.

Definitely worth going back.