Numerous test done and still have not been diagnosed

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Please help! I’m open to each opinion. 

I’m writing for my fiancé, the problem is very odd and has gotten worst over time so I will start from beginning. 

Back in October of 2017 he has had bad pain in the left knee, however he always had bad pain in that knee so we thought nothing of it but he would mention it felt worst. This knee pain was always during high school while playing football and his doctor back then told him that the bone was basically poking out but it would be something he has to leave with. SO knee pain in the left leg was always there however during December 2017 we took a family vacation which was to Kentucky. We drove from California to Kentucky as an adventure and to visit family for Christmas. Well, temperatures were way below to what he’s use to and he swears during that time his knee pain got worst. It started to affect they way he walked. We were concerned but thought nothing much of it. So in February we notice his muscle was gone! He lost a lot of muscle for a stocky guy. There is still a little bit left but all muscle is pretty much gone at this point from his leg as well as the pain had started to go to the right new and by March 2017 the pain started going downwards to his feet. Also he know was having a hard time walking because the pain was hurting so much!! He literally wanted to considered using a cane or crutches. By the way he is only 26 years old. We then took him to his primary which is the same primary from high school so she is aware of the issue with left knee pain however states that could not have caused this. So during  March 2018, she told him to attend physically theapry and she did some blood work. She also did an x-Ray of his legs, which everything was fine. Blood work came back, they did find some things were high such as hormones, salts & cholesterol however at this point the pain is like 10+ and he’s unable to sit or stand comfortably, we notice major weight lost and muscle loss and just by moving his toes they were cracking so we demanded an MRI  however the primary said for it to be covered by insurance we must complete physical theapry for 6 weeks. So he did that and cried basically after every session because it was really painful. During his theopry sessions they did not know what to do because how he was in so much pain but they did some stretches and no difference to his body was done. He even did the stretches at home daily, in pain. We then did the MRI which was of the lumber and nothing was found according to primary dr. They then referred him to a neurologist who apparently was so busy the appointments were like a 3 week wait. The neurologist had no idea what was going on and wanted to do a nerve study, well we finally made it to the appointment however before that appointment he had a break down and fell multiple times in one days because he stop taking pills that we got from an emergency room for pain. Those pills was giving a bad side affect, took the pain away but horrible state of mind and depression. That ER subscribed him I believe flexoroid, for muscle spasms. (By the way that ER did not see him because apparently it didn’t seem life threating so they sent him home with pain meds) SO anyways, after he stopped taking those pill about four days later the pain was back and worst and he fell multiple time one time it was just straight back and he seem so confused and lost so I then took him to another ER that admitted him for four days ran multiple test and nothing. They found nothing, HIV Testing, Menegitist, Lumber Spain puncture, and much more(If you name something I’ll let you know what was the results, I did obtain a copy of the medical records) unfortunately they way he came in they gave him Morphine for the pain & put him as a risk for falling as well. I believe the morphine was a bad idea him vomit the whole hospital stay and ate nothing during those days. The did multiple MRI’s with and without contrast and nothing. They sent him home with a walker and for a moment they were thinking he has dandy walker because they also found a spot in his head that appears to be liquid they say. They also found some disc bulging but claims it’s not too serious. I’m no doctor but they way everyone responds to this they seem so lost his primary even told him she didn’t know what else to do it’s out her hands at that point and he had to see a specialist, the neurologist. So after the ER visit we explained it to the neurologist office and they moved the appointment closer, and basically said he passed the nerve study, so this isn’t related to the nerves. His primary suggest we refer him to UCLA as well as a doctor in the primary building states no doctors in our city are any good and were better off in UCLA so we put the request and our insurance denied based off medical condition. SO I do not know what our next step will be at this point everyone who knows him says he looks sick and has lost so much weight, mainly muscle. He better mentally and dealing with this doing daily routines however is not working because actually September 2017 he was terminated which was for wrongful termination. We still do not know what the reason was for which I’m now going to mention the only changes in his life, which was the termination from work. He did pest control for 7 years, did not wear a mask, apparently none do however during the ER visit we also mention to test for checmical poisoning. He did start back smoking marijuana after the termination which he did not do while working because he drove a company vehicle but before working with the company he smoked. As of today I took him to another primary for a second opinion who will now be sending him to another neurologist for a second opinion. However the second primary wants him to see if he stops smoking will it make a difference(& he’s trying, so has not smoked), and the only othe life change is we notice like maybe during March 2017 he became like lactose. Like every time he drinked milk or ate cheese he would have bad diarrhea and go to the bathroom 3-4 times daily. So we are now wondering if that effected something during the time we notice he had this problem he was stubborn and continue to eat it. Well because he’s never had a lactose problem but as of two weeks now he has not ate anything containing milk to see if there is a change. 

Any suggestions??? 

Any details I left out, please let me know! He feels weaker and weaker, any opinions will help! 

Also the last thing I forgot to mention as of now he is twitching and sharp pains in different areas of the body, and more cracking with his joints. 

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  • Posted

    So sorry for what your fiancé is going through. You mention the lactose, I’m wondering if it could be gluten instead. Has he been tested for celiacs? The testing isn’t accurate even if he has so maybe he should try cutting out gluten for a week and seeing. My sister thought she was lactose intolerant for the longest time and then discovered it was actually gluten. Celiac is an autoimmune disorder so it can cause a slew of symptoms besides the known stomach ones. 

    I’m also wondering if he’s been tested for arthritis or perhaps other autoimmune disorders? You’ve mentions seeing a neurologist, it may be worth seeing a rehumotologist. 

    Until you get a diagnosis it may also be helpful to consider acupuncture. It works wonders for pain not sure how but it does. I’ve been dealing with chronic neck pain for nearly 10 years (I’m only 21). I had a similar story where I couldn’t get a diagnosis. Following the neck pain was health problem after problem and weird symptoms with negative tests and no answers. Long story short, I found out I had Lyme through a Lyme specialist (recommended by my acupuncturist). His doesn’t sound like Lyme to me but it also may be a good idea to look into that. You can look up the symptoms to chronic Lyme and if he matches a lot of then definitely consider that. Lyme testing is one of the most inaccurate tests. Anyway, the nearly 9 years without the diagnosis, acupuncture was the only thing that relieved some of my pain and symptoms. Acupuncturist also notice things that many doctors do not about your body and so they may also help steer you towards a diagnosis. 

    I hope this helps. I know how frustrating this can be but tell your fiancé to hang in there. Take things one day at a time. 

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  • Posted


    You mention lack of tone in the muscle of the leg. You also mention playing football when young. You mention Mental Health problems and also not wearing a mask when dealing with a pest extermination company. He on occasions smokes weed, also a bone out of position in or next to the knee

    I am not a GP so all I can suggest is things that may work, that I have tried in the past as a Chronic Disabled patient.

    If you have problems with on leg this will put stress on another the same applies with disks as mentioned above.

    Posture becomes a problem, when walking the bad knee will affect the other leg because you are putting stress on the good leg from the bad. You mention the injury became about when playing football, could it be the knee joint and the knee cap were out of alignment when playing football, it was not treated or it went back in place and did not show and the damage was hidden.

    If you do not use it, you loose it comes to mind, also if you have become protective of a joint that will effect movement and cause not only stress on the bad side it will cause problems in the good leg as well as the body, it May be the stress has also affected the disks in the spine especially if He has been lifting or bending.

    The fact that he did not wear a mask when dealing with pests was not a good idea, substances used can also cause health problems unknown.

    Smoking weed can also cause contraindications and that can cause change of mood. 

    There are pieces of medical treatment you could try, A TENS MACHINE blocks nerve pain and an EMS. this machine is used by Sportsmen to tone up their muscles. We get them in the UK and I think AMAZON may have them as well. In the UK there are companies including chemists sell the TENS you will need or find a Variable two channel tens can treat pain in two different areas say on one leg, There are books you can get to explain how and where to use the electrodes, the machines work on an ordinary 9V DC Battery. 

    The EMS Machine works on lower frequencies, in fact if you purchase a TENS sometimes can work at lower frequencies, take advice. It  will tone up muscle groups in the leg etc etc..

    To be honest I do not know if your boyfriend is suffering Anxiety, there are various things you can try. MINDFULNESS is a Relaxation Technique, that includes various other helpful techniques that may help.

    If He is taking pain medications and possibly NSIDs medications to reduce joint swelling that may help.

    I take an AD Medication called Amytryptalene that reduces nerve a secondary benefit.

    To be honest as mentioned above I have no medical training, not a GP above gear, I have a V-TENS sold by BODY CLOCK. They also sell various medical equipment  and they are in the UK

    Because of the pain you could try a certain amount of exercise, and look up articles on posture on the Internet. That may also help. If your Boyfriend is out of balance when sitting or walking  that can cause additional pain.

    You could check up on chiropractors in your area, they are alternative Specialists that deal with joint problems and nerve damage by manipulation. In the UK they are generally all registered.

    I do not know what else to suggest, always take advise from your family GP


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  • Posted

    You say

    He lost a lot of muscle for a stocky guy.

    pain started going downwards to his feet

    has lost so much weight, mainly muscle.

    temperatures were way below....he swears during that time his knee pain got worst

    fell multiple times

    Sharp pains

    Could this be Diabetes. As the pain increases he is less mobile, does not burn the sugars in his blood. Pains in the legs and feet is also a symptom, the pain increases in the cold due to poor circulation. Losing muscle as he burns up, not burning the sugar. A Diabetes blood test will give the answer. Good luck.

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  • Posted

    Hi there,

    I'm not going to delve into his depression etc., because that will never truly resolve, until his pain is resolved. You don't mention X-rays, has he had them done? They need to take him into hospital, & perform an arthroscopy. That's a camera inside his knee, but don't worry, he'll be under a general anaesthetic, so he won't feel anything.

    As he's losing so much weight, has he had blood tests for micro organisms? They can cause a whole host of symptoms. However, he may be losing weight because he's in so much pain that his appetite is poor. Please tell him that the marijuana is definitely not helping, so he needs to stop.

    If I think of anything else, I'll be in touch.

    Warmest wishes,



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  • Posted

    Hi, you and your partner are facing a difficult journey. I have nerve damage from disc injury from an activity in my younger years. It progressed over time which let to fusing surgery of lower spine. From that to every procedure there is to an nervro implant that stimulates to confuse the brain and reduces the pain involved in all of this situation. The symptoms you describe sure sound like nerve damage and spinal cord problems to me. I caution you to be very careful as to how much exercise or physical therapy you seek as it too can cause extra damage and profound pain. A bulging disc is a serious problem so even if it is small it still can cause a great deal of pain. I like the idea of going to a place such as the Mayo Clinic etc. My best wishes are with you. 
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