Other symptoms and tests besides neurological?

[Momofson]

I keeep reading about the neurological disorders and pain but have many of you had out of range blood test, tumors, flares on MRI, other symptoms like hormones that are out of range? If so, please list other symptoms or tests so I can get a better idea.

[Jazymay]

I know they did a spinal MRI scan and found my cervical vertebra were damaged, "But not enough to be putting pressure on my spine." Apparently it made no difference to my symptoms. Except they glossed over the fact that my hands get numb and tingling, as do my feet. I get pain in my neck and back. I get migraines and facial pain too.

As I have PTSD, it is *clearly* ALL psychological. It always has been since my psychiatric diagnosis. Even the ambulance treated me for a panic attack for 20 minutes while I was actually having a serious heart dysrhythmia, which could have ended in a heart attack. They kept telling me to calm down and breathe.

[Mat08]

Hi so far I have had work done on a tuma found on my chest area and 10 ops on removing tumas from my bowel my condition rapidly deteriorated after the work on the tuma in the chest and my condition now classic d as untreatable big respect mat

[Momofson in reply to Mat08]

Have you been checked for auto man and suffer like this or for Nuro sarcoidosis? Or any Sarcoidosis?

[Momofson in reply to Mat08]

Have you been checked for sarcoidosis or antibodies for autoimmune? You mention chest tumors...is your ACE level high? Read about sarcoidosis and Neurosarcoidosis.

[Claireeve in reply to Momofson]

I've not been checked for sarcoidosis and my ace levels 101 also have alot of medical problems including all the above got diagnosed with fnd year ago got tested for ms like my mum but my lesions didn't fit in the typical pattern apparently I suffer with lesions on the brain fnd fibrogyia svt fowlers syndrome ibs chronic spinal pain headaches and the list can no on depression and anxiety that's got worse over last year any comments from anyone on this

Best wishs claire

[Hidden in reply to Claireeve]

Misdiagnosis or feeling belittled and not believed can cause white coat PTSD. It’s often a case chicken or egg with anxiety as pain and neuro symptoms can make us feel anxious and depressed. For example people with MS, Lupus and Sjögren’s often suffer from anxiety and depression as part of the disease.

Sjögren’s Syndrome can mimic MS and blood tests are normal in 25-30% of sufferers. hopkinssjogrens.org/disease...

[Claireeve in reply to Hidden]

Thanku for a bit of guidance I will ask the doctor about this any help is very much appreciated I feel like I'm stuck with doctors and speacialist right now I wonder why my ace levels were 101 when I ask i don't get a direct answer I get called a complex case as there's alot wrong medically when I looked my ace levels were higher then they should be but no answer to why thanku for your reply best wishes claire

[Hidden in reply to Claireeve]

You are welcome. Raised ACE levels indicate Sarcoidosis. Have you already been diagnosed with FND? I hope not because all other possibilities should be excluded first. There are so many possible things that could be causing your neuro symptoms that it’s good to get copies of your results and try and research yourself in case you aren’t listened to properly or in case something gets missed.

[Claireeve in reply to Hidden]

I think I will ask for this to be checked yes said I had fnd about a year ago i got diagnosed personally i do think something being missed i will start getting more copies of medical notes to Thank you for your help and advice I appreciate that alot thanku

Best wishes Claire

[Momofson in reply to Claireeve]

With having chest tumors and high ACE, I would certainly have someone check for sarcoidosis. With depression too, I’d have them check for Neurosarcoidosis for sure! That can kill you if they don’t treat it and sometimes they don’t look for it. I’m told a Rheumatologist is the best doctor to find that. High ACE is one of the biggest clues to all sarcoidosis and it can be anywhere in your body but mostly in the chest.

[Claireeve in reply to Momofson]

Thankyou for your reply this worries me because lately I have been suffering more with my heart and lungs got diagnosed with svt for sure i will get this checked what would be the best way forward just to ask the doctor to look for this can they do this through bloods ??best wishes claire

[Momofson in reply to Claireeve]

Usually the first sign is in the lungs but not always. They will do chest X-ray first though. Look up high ACE and sarcoidosis. It can also effect your brain.

[Claireeve in reply to Momofson]

I have alot of unexplained lesions on the brain I will look into this thank u again for your help guidance towards this thankyou

[Momofson in reply to Claireeve]

I think a Rheumatologist is who is best at sarcoidosis.

[Momofson in reply to Claireeve]

What is svt?

[Claireeve in reply to Momofson]

Supraventricular tachycardia it's were your hear beats faster then normal never seen a rheumatologist thanks I looked into your suggestions omg seems more likely then fnd

[Momofson in reply to Claireeve]

Much more likely! You probably need a Pet Scan too but definitely a chest x-ray of your lungs. It can be tricky to find sarcoidosis. Sometimes it’s in the spine so that’s why I said Pet Scan. Don’t forget if anything mental is happening, it can cause that too...it’s called Neurosarcoidosis. Good luck and let me know what you find out.

[Claireeve in reply to Momofson]

Thankyou so much for your input I have a doctor appointment tomorrow and I'm asking if this is possible I could have these tests had mri ad ct scan but no pet scan though also this has been mentioned to me by speacialist and doctors but never investigated just for ms but instead was diagnosed with fnd one years ago and diagnosed with all the above medical problems I suffer with I hope you are well and thanku for your help and guidance worth putting this forward after all these years if in and out of hospitals and getting no where and struggling I have done a bit of research and everything just seems to fit into place thanku again I will keep you updated on this

Take care claire

[Momofson in reply to Claireeve]

Also have them check you for POTS and Dysautonomia. You need to have them check your blood pressure sting, standing and laying down! Tilt table tests and many other test for these conditions. They are overlooked many times!

How did your doctors appointment go? Any new information? Did they take you seriously this time? Please let me know.

[Claireeve in reply to Momofson]

No just another let down I explained to my doctor who does understand me and totally agrees that something is defiantly going on and not to settle for end diagnosis when many at her things have not been ruled out and i asked her for the tests to be done she stated that I have never been checked for neurosarcoidosis or sarcoidosis and said it would be down to my neurologist to get these tests done i feel so deflated with it all and at my wits end with it I'm going to contact my neurologist secretary to see if can get an appointment and be checked for all other problems rather then fnd diagnosis and a website ..how are you I hope you are well

Best wishes to everyone

[Momofson in reply to Claireeve]

You definitely need to be checked for any sarcoidosis! I know you feel deflated but I think you may find your answer there! Dont give up! Do you have anyone, maybe a family member that can help you get appointments? It is my 45 year old son that is having problems and has been diagnosed as having FND, which I will never except with all his problems. He will be having his thyroid removed this Tuesday and hopefully that will help a lot. They suspect a cancerous tumor plus his thyroid is covered in all different sized tumors and goiter. Please keep searching and try to find someone close to you to help. It is very hard when you are sick and don’t have a health advocate. I read 5 to 6 hours a day trying to find answers. If I wasn’t helping him, he would be on depression meds with no real help of finding out what is really wrong. He definitely would not be getting his much needed thyroid surgery! I hope either a family member or good friend will help you. Don’t be afraid to stand up for yourself!

[Claireeve in reply to Momofson]

Thanku for your kind words it's nice to talk to someone I do have family which I'm grateful for very grateful but i feel they don't understand and I'm very much alone in all this much maybe because we don't know what's wrong I'm very depressed my anxiety is worse with this all. I feel it's getting worse with my illnesses and the not knowing what is wrong or what to do to help myself I will never give up with the doctors I need to carry on persisting I'm going to see professor Edwards in London In March I'm hoping so much that he will help me ive heard good things about his clinic and most people that get sent to him 9 times out of 10 they don't have fnd I defently no my own body more then the doctors I try so hard everyday to do better and help myself like you said is very difficult when health is so bad everyday... I send nothing but my best wishes and hopes for your son I'm sorry to hear he's having such a difficult time he sounds like he's very lucky to have you and is very blessed that you have pushed for the help that he so clearly needs good luck with his surgery and please keep me posted on how this goes keep well

Best wishes Claire

[Momofson in reply to Claireeve]

Thank you Claire. Please also keep me updated on how you are doing and I'm very I treated to hear what Dr Edward's has to say. I wonder if he has any YouTube videos or Ted talks. I'm going g fo look.

[Claireeve in reply to Momofson]

I will do thanku again I have never looked I might do the same i heard about him on here I'm so hoping here help me as I heard he's helped so many others

Best wishes claire

[Claireeve in reply to Claireeve]

Has anyone on here been to see professor Edwards in London

[Mic67 in reply to Claireeve]

I saw him this week at St Georges.

Prior to this I have really battled to except this as a diagnosis, although I could see that one of my symptoms (inability to raise my legs) was unexplainable by any other conditions, especially as it only happens when I am in certain positions.

But my main worry is my gait and slight leg spasticity which is causing me widespread pain if I am too active.

Anyway, I had watched a lot of his talks etc, and could see he was a humble guy with a nice manner. He had 4 students in with him which I thought was good as the more people learning about this, the better.

I was in there 50 mins. I like that he admitted that it is impossible to know what exactly is causing my gait issues in one appointment. He also acknowledged my spinal issues and fatigue over the last few years probably being the precipitating factor in my nervous system going haywire. He is getting me in with his neurophysios for a three day intensive physio later in the year for a thorough gait assessment. I couldnt ask for more than that at this stage.

He is a humble man. A proverbial unicorn in the medical profession!

[Claireeve in reply to Mic67]

That is so promising to hear that thanku for your response I just want someone to try and help me I'm looking forward to also meeting him at st George's

Best wishes claire

[Momofson in reply to Claireeve]

He is on YouTube...very interesting!

[Claireeve in reply to Momofson]

I'll have a look thanku for ur input I hope that u stay well and continue to get the right help

[Gud4Ewe]

Arthritis in my spine, sudden and aggressive deterioration of my uterus resulting in a complete hysterectomy, & thyroid nodule so large I had to undergo a lobectomy.

[Momofson in reply to Gud4Ewe]

Did the thyroid surgery help you feel any better? Are you on thyroid replacement?

[Gud4Ewe in reply to Momofson]

I was placed on a low dose of Levothyroxine and told that I didn't really need it but my levels were on the lower end of normal, and they thought it may help. After the surgery, I had less sore throats and fewer issues with my tonsils. Over the next year, I saw a weight gain of 30 pounds and had a lot more randomness to my flare-ups. They checked my thyroid last month and almost tripled my levothyroxine. Before I picked up the prescription I requested the results. They were sent to me by mail. I was furious. The test showed I was on the low end of normal, but I was at the same number I was when they gave me the 1st dose. I didn't suffer without it, and I wasn't great about remembering to take it. He asked me to take it at night, and I forgot most nights. At the time that bloodwork was drawn, I had not taken it in about a week. In my opinion that would indicate that my body is currently producing enough on its own and boosting it synthetically was doing more harm than good to the rest of my conditions. Also on that same test was my Vitamin D. It was 2 points away from being an emergency. I was at the bottom of the D barrel, low. My medical history clearly states that I have had 13 abdominal surgical procedures as a result of complications from a gastric bypass in 2014. As a result, I have a problem with absorption. By calling me in a triple prescription for something I really didn't need, but not saying a single word about something I HAD TO HAVE, I consider that borderline malpractice. I went to the Vitamin Shop, got a bottle of high dose dissolvable D3, and told the pharmacy I would not be picking up the prescription. In a month or so I will go in to see my general doctor and request a thyroid panel and a nutrition panel. We will see how my body does with the boost of D and removing the Levothyroxine. If my D is still low, I can address that with my GP and adjust that dose accordingly. If my thyroid has dropped function, I will agree that I need the medication and will fill that prescription. If my thyroid holds and the pills aren't needed, I'm finding a new endocrinologist.

[Momofson in reply to Gud4Ewe]

It’s so hard to find a good doctor that cares. It will be easy to see where your TSH is since you are not on any medicine now. I don’t think you should wait a month though. Getting your thyroid at the right dosage makes you feel so much better than when it’s higher or low level. Many of the doctors do not go by the new standards of the American thyroid association that of been out for probably 10 years and the lab still go up to 5 1/2 when in reality a national Association of endocrinology says TSH should never be above a three and anyone that’s had thyroid issues or thyroid in their family should never be above a 2.When you do go in to get your thyroid levels checked, make sure they also check the anti-bodies against your thyroid which is TGNTPO. I was are very important to check when you’re having thyroid problems

[Jazymay]

Yes. PTSD is a label that omits all other problems, until proved otherwise. Instead of presenting as other problems until shown to be PTSD.