Hello everybody, I've been having extreme fatigue, photophobia, tingling extemities, trouble concentrating, cold hands, also my ringer finger twitches all the time.
I've a lot of blood tests, CT Scan, Brain MRI with contrast, electromyography, ...
Doctors are telling me everything is psychiatric, but I'm slowly declining everyday, if someone could give me ideas, or possible diagnosis I would really appreciate it.
Thanks beforehand, David.
So sorry that the doctors aren't taking your symptoms seriously. Before MRIs, if someone would emerge from a hot bath with extreme fatigue, they would suspect MS. Since you say that you are already fatigued, not sure if this would work for you.
Many of us had multiple seemingly unrelated symptoms for years, before we were able to get an accurate diagnosis.
MS seems to share symptoms with lupus, RA, and other diseases.
Good luck.
Hello Iona60, how are you?, thanks for replying, I'm in a process with my GP, but they have been really slow (neurologist every six months), and just refered to psychiatrist because they thing is anxiety (not even in college I had anxiety symptoms), really don't know what to do.
Hi David, pleased that you found us. Have you been to have your eyes tested? You need to see a doctor who will listen to you. Write all your symptoms down then present them to him/ her, tell them how you really feel, don’t be afraid to tell them even the slightest symptoms as they could be a clue to what is going on. I hope that you can find a good doctor. Keep us posted and let us know how you get on. Blessings Jimeka 🦋 🍫
Hello Jimeka, how are you?, I had my eyes tested last year, the doctor said it was an astigmatism though I have never had vision problems, they are light sensitivity, when I watch a movie I see double subtitles, and general symptoms are extreme fatigue, disorientation (can't place myself in space, ie, a room), really bad memory (forget what I was going to do, misplacing things, someone tells me something and I forget immediately), also have troubles listening to sounds (feel like I can't hear them properly), also cold hands (not lately).
They refuse to do other tests before a psychiatric evaluation for anxiety (how irresponsible) that it could take six months, I'm struggling everyday just staying at home, I have some money to get private tests, should I get any special test, because I'm nineteen years old and my life is wasted, can't even do a simple walk without getting tired, do you have some tips that could hep me with fatigue and pain (worst symptoms).
Thank you so much.
Oh David, only 19, you shouldn’t have to go through this. Where do you live and maybe someone on here can suggest a good ms specialist. Or ring the MSAA helpline, they should be able to give you some sound advice. Keep us posted. I live in the uk so I am not familiar with your American medication, sorry. Blessings Jimeka 🦋 🍫
Hi David, welcome to the forum. Sounds like you are going thru the same symptoms I had and Dr's Dx. So, so frustrating. I finally hit on the right dr. who did a lumbar puncture and an evoked potential, and gave me my MS dx. Not what I wanted to hear, but I finally knew what I was dealing with. Hope that helped some. Keep us posted on what is going on. Good luck.
Brenda
Hello mrsmike, how are you?, I asked the internist for other tests including EP and LP, they are just saying is all anxiety, which I disagree, I've been suffering with this more than a year, and they say nonsense, I know my body more than everybody, I mean I know that what I have is not normal.
Hi Dave,
You are absolutely correct. You know your body better than anyone. You don't want something to be wrong, but you know there is. Try finding a neurologist who specializes in MS. Most all of your symptoms mirror the ones I had and have. My internist was pretty useless also and believed I had everything but MS.
I’m so sorry that your symptoms trouble you so deeply. I would hazard a guess that all of us have felt much like you do now. To be fair, our emotions can have a huge effect on our physical symptoms. But I would wonder why there is unwillingness to do further testing right away. I understand your frustration in having to wait.
I hope that after the psychological evaluation you can begin more testing. I had a possible CIS over 20 years before being diagnosed, as well as more vague symptoms over the years. It wasn’t a joy to learn I had MS, but it was such a relief to put a name to all those strange symptoms. Getting an accurate diagnosis also meant getting treatment started.
I’ll be praying for clarity in your diagnosis and for relief from these symptoms. It may very well not be MS, but I hope you let us know how you’re doing and how the testing progresses.
You’re not alone.
I was right there with you! I think you can go back through my posts on here to see my timeline.
"They" thought I had a psychiatric problem. It really hurt my ego. I had never been depressed or had disabling anxiety. One neurologist said it was PTSD causing it. I mean, I do have PTSD from childhood trauma, but why would it start causing problems when I was in my 40s?? The neurologist said it was because I didn't have babies anymore and I needed a hobby (basically, I'm paraphrasing, my youngest is 13 now).
So I went on the anxiety/depression meds and saw a therapist like they wanted. But like you still kept getting worse, not better.
This board convinced me to ask for a referral to a MS specialist. I have to drive 2 hours, one way, to see her and it's worth every minute of the drive! Without this board I would have never known all neurologists weren't equally able to diagnose MS.
I actually haven't been diagnosed with MS though. I had one attack and my brain MRI said "too many lesions and could be MS with a clinical diagnosis". That was last year. In the mean time I was diagnosed with Rheumatoid (a systemic auto-immune disease). I actually thought, check mark! Finally, I know what's wrong. Then I had another neurologic attack and my rheumatologist wanted me to see the MS specialist again. So I have been back in testing for MS again. I had another nerve conduction study and my brain MRI is scheduled for June 3rd. So I wait again. I honestly don't know if I have MS but I *DO* know it's not psychiatric! It really hurt my ego (and feelings), I was so used to being the rock for my family, it's been a really hard mental game to figure out the mental aspect of having a chronic illness.
My suggestion is ask for a referral to a rheumatologist for more auto-immune testing and ask for a referral to a MS specialist. I went ahead and took their meds and therapy, to be compliant and I'm not really sorry I did. I switched to Cymbalta to help with pain and it was nice to see a therapist.
Good luck and keep us updated on your journey! Being chronically ill has been the hardest thing I've ever ever done and I haven't exactly had an easy life.
Hi Hidden !
I'm sorry you are finding yourself in diagnosis limbo land. Its no fun for sure. We aren't doctors here so obviously can't diagnose you.
You certainly don't want to take the powerful M.S. drugs if you don't have M.S. I sure wouldn't take the risks we do with the newer biologic drugs if I wasn't sure I had the disease. There is no single test to diagnose M.S. as you probably know but there is a specific criteria called the Revised McDonald Criteria published in 2017 that is the gold standard to diagnose M.S. There are multiple diseases that can mimic MS. Here is a link to the National MS Society's list of those: nationalmssociety.org/Sympt....
Even tests like the lumbar puncture aren't without risk. Our minds can affect our bodies with anxiety and depression being common causes of physical problems. So...since MS is often diagnosed by ruling other things out, let them rule out anxiety and then you take it from there. Follow some of the really good suggestions from the other posters here like writing down all your symptoms and maybe seeing a rhematologist to rule out other auto-immune disorders.
Good luck!
New to the crew with questions
Persistent Scalp Itching
From MS Warrior Ellie 
