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Frank
@frankthetank112358

Posts: 6
Joined: Mar 14, 2017

Possible Rare Condition or Just Chronic Pain?

Posted by @frankthetank112358, Mar 14, 2017

Hi! My name is Frank and I’ve been suffering some odd symptoms for 10 months now. I’m now 22, 5’7″, and I average anywhere between 132lbs to 135lbs.

Here is a quick summary of my symptoms but I would greatly appreciate if someone read this Great Wall of Text.

Muscle pain
hands, forearms, upper back, neck and scalene area, lower legs and feet

Twitching
usually in legs and at rest, also happens in other parts of my body rarely

Elevated pain after exercise
even if it’s just typing on a keyboard, walking 2 to 3 minutes, or holding my cell phone up for a few minutes.

Tingling
usually in all ten fingers (usually one or two at a time), also happens in odd areas around my body like below my kneecap

Squeezing sensation on finger tips

Tight, knotted muscles
They get really tight. It’s as if I do a full body workout every day and never give my body a rest, but I usually just rest.

Bruxism
I clench my teeth in my sleep (I used to do it pretty hard which I realized during sleep) I don’t do it nearly as bad but I realize I do it when I get up

Tinnitus
A side-effect of the Bruxism, most likely. I used to worry about this and clenching. I have more to worry about these days.

Muscle clenching
I realize I am clenching my hands or quads involuntarily. I’m probably doing this in other parts of my body, but I cannot control certain muscle groups. I sometimes realize that I moderately squeeze a napkin after picking it up as if I tell my hand to hold it gently and then my hand involuntarily applies slightly more and more pressure. All of the clenching is involuntary.

(Sorry for the long read, I will put a quick list of my symptoms at the bottom, but I feel the need to tell my story to give as much information as possible)

1 year prior to the muscle pain I started clenching my teeth. This was a pretty stressful time for me since the van I inherited broke down and I dumped almost all of my life savings into a new car. I’m not sure if the clenching started around the same time since it was a wile ago. I didn’t really think anything of it. 6 months later I had ear clicking a few times that day and then my right ear started ringing. That night both ears were ringing and they haven’t stopped since. That was over two years ago and my stress levels have gone down. I should note that I do not know how to measure stress and I don’t really know what it feels like. At the time I didn’t think I was stressed and I don’t know if I was. I’m a pretty calm and collected fellow. I did not have a traumatic past, although my Grandfather passed away unexpectantly a year and a half prior to these events (which is where I got the van). I spent a lot of my childhood being driven around in that van with my siblings and cousins. When the van died, I remember being upset that I had to get a new car. It was not very sentimental to me and I have plenty of objects that are sentimental of my grandfathers’. Maybe it was subconsciously sentimental to me.

I’ll start by telling you everything I don’t have:

My EMG was 100% normal as well as most of my blood tests. I have elevated EBV antibodies possibly due to an exposure to Mono. I used to have a vitamin D deficiency. And I had an elevated White blood cell count. I have a normal urine test. I have no pulsating sensations going from my spine to my fingertips or vice versa. I don’t have weakness, but I haven’t been doing much over these past 10 months, so I’m not as strong as I should be. I do not have depression and I thought I might have been stressed, but after 3 sessions of stress therapy, my psychologist and I deemed that I was not stressed, or stressed enough for therapy. I was misdiagnosed with Carpal Tunnel Syndrome and Tendonitis. My Neurologist thinks I have something called Myofascial Pain Syndrome and my Rheumatologist thinks I have McArdle’s Disease. I have to disagree with them. I don’t have “bouts” of muscle spasms (My symptoms are pretty consistent), blood in the urine, or a history of accused laziness such as someone with McArdle’s.

I do programming at work and play chess on the computer from time to time and I find it almost just as easy to concentrate from what I was used to. I don’t have the “Fibro-fog”. I can do a full 8 hours of programming 3-4 days a week at work, concentrate at school, while I’m driving, and so on.

I was tested for Lyme’s Disease, but it came back negative. After talking with a co-worker he told me that he had Lyme’s and he had slightly different symptoms. He said that he didn’t even get tested, the foot doctor he went to just prescribed it. I would love for this to be Lymes, but my Rheumatologist and Neurologist believe that it can’t be since the test I had was negative. I hear that the normal test only tests for 2/12 strains while the other tests come back positive, even in people who don’t have Lyme’s so they don’t miss people who do have Lyme’s. I’m willing to take the antibiotics without a diagnosis (I believe the worst it can do is clear my acne), but I heard that it doesn’t help if the Lyme’s is in your spine.

I also do not have any problems falling asleep. I did use to sleep on my stomach without a pillow forcing my head to the left or right which may have put a lot of strain on my neck and spine. Directly after the pain started, I changed the way I sleep (Now on my sides) and I use a memory foam pillow. I had an ergonomic evaluation at work and just about anything I could do to make my days as efficient and less strenuous as possible. I don’t drink a lot of caffeine. I’ve tried going a few weeks without coffee and it didn’t seem to help. I generally drink 1/2 to 1 cup of caffeinated coffee a day. I would estimate my caffeine intake to be 245mg – 315mg a week. I don’t smoke, I don’t actively drink alcohol. I used to drink a shot of vodka in ginger ale every once in a while but it keeps me up, surprisingly, so I stopped about 4 months ago. I also tried acupuncture, heating pads, ice packs, Advil, Tolenal, Vicodin, and Tramadol. None of this helps although the Tramadol sporadically kicks in over the next 16 hours. It is about 1 to 2 hours of minor relief over the day I take it and it also causes me to be impotent the entire day. I can’t take Tramadol when the pain gets bad since it may take 2 to 6 hours to kick in and it may only work (barely) for about 20-30 minutes at a time. I also went on a dairy free and gluten free diet for 2 weeks which had no results. I generally eat pretty healthy. I’m one of those guys who can eat whatever they want, when they want, so I do have some sweets or 37 totinos pizza rolls from time to time. I also tried Vitamin D, CoQ10, and I just started Magnesium. Not much can subdue the symptoms, however.

I have a lot of symptoms and I believe some of them may be irrelevant, but I will put them here just in case. Here are my current symptoms:

My most prevalent symptom is muscle pain. It started in my arms and hands 10 months ago after playing piano and I had some pretty bad tingling in all fingers. My first doctor was an arm specialist. He believed it was from playing piano my other arm intensive hobbies (I program, solve Rubik’s Cubes, and worked at a restaurant at the time) so he believed it was CPS and Tendonitis, thus giving me arm braces, two different kinds of NSAIDs, Meloxicam and Nabumetone, as well as physical therapy for my arms. Therapy made my arms feel worse, and I think it’s important to note that exercise makes my muscle pain worse. It’s also worth mentioning that the medication did not work. The tingling comes and goes. Sometimes I go 2-3 weeks without it. It’s usually in my finger tips (in any finger tips not just my pointer, middle, and thumb). I’ve also had tingling in my toes, foot, hand, forearm, leg below the kneecap, neck to right of the spine. and other bizarre places. It usually happens in my fingers 90 percent of the time. I would like to reiterate that there is no sensation going from my spine to my fingertips. I’m not closed to the possibility of a pinched nerve or a herniated disc, however. I’ll take anything I can get at this point.

I believe the NSAIDs damaged my intestines and I had lower abdominal pain for a few months. I realized that spicy food and decaf coffee made the intestinal pain worse. I also found blood in my ejaculate which shortly turned to gelatin and then disappeared altogether. That was about 7 months ago and my intestinal pain has subsided but I have to stay away from spicy food and decaf, although instant decaf doesn’t bother me. The spicy food and decaf did not bother me before.

During the arm and hand therapy, I started having pain in my upper back and neck. At the time I still believed this was from overuse. I stopped playing piano (and limited arm use) as soon as I had my symptoms (4 months prior to this time in the story) and I rarely used my arms. If it was over use, I would have made a recovery by then. I usually just paced around the house since I have nothing better to do. I would also walk to my grandmothers house (about 20 minute walk) and then walk on her elliptical for about 15 minutes and walk back. I realized that my legs hurt and thought it was because I was out of shape. I kept doing this every saterday until I realized that it wasn’t being out of shape: It was the same thing happening to my back and my arms.

I stopped going to my grandmothers and limited my pacing (I sure do like to pace). My legs started feeling better. At the same time, I started getting frequent twitches in my legs. The twitches happen at rest and it usually jolts one of my ankles to the side, or twitches at the kneecap, or even the quad. Since then, the twitches were as persistent as the muscle pain. Over the next few months they have slowly made their way upwards. My arms and fingers rarely twitch, but my neck does twitch. I also rarely get twitches in my back. Once or twice a twitch has caused my entire upper body to rotate. They happen at rest and they usually still happen in my legs. After 15 minutes of rest my legs twitch anywhere from 2 times a minute to a few times every 5 minutes. A few months ago my jaw started rarely twitching and most recently my eyes have started twitching. I assume my temple will start to twitch next. Hopefully it stops there. I don’t want my hair to twitch, too.

Around this time I started school and used my my pain and school as an excuse to quit my job at the restaurant. I continued to work at my internship developing software.

Around month 4 1/2 of pain I went to a Spine Specialist at Rothman. We were in the same room for 5 minutes until he said that nothing was wrong and offered me physical therapy. That was the most frustrated I have ever been with this condition and I felt like quitting. I eventually met with a better spine doctor around month 5. This doctor spent the first 5 minutes reading my pain log and then laid me down on his table. He touched my spine and instantly felt that it was out of place. He popped 3 vertebrae in my upper spine and 1 in my neck. He then spent about 40 minutes loosening the knots in my back. I felt great. He offered me therapy, and I took it despite my thoughts that it made me worse before (and it was really expensive). I realized when I got home that it no longer hurt when I clicked my mouse. The good feelings lasted another 2 days and I was back to the normal pain. I went through 6 weeks (twice a week) of physical therapy for my back which didn’t help. I never felt fantastic after therapy and when therapy ended, I went back to the Spine Specialist and asked him to adjust my spine again thinking I would have another 3 days of pain vacation. He adjusted 3 vertebrae in my spine and loosened my muscles for 10 minutes. It didn’t really feel any better after that. I stopped going to the doctors to my spine adjusted since I believed I would just be wasting my money. During that month and a half, my legs started hurting again.

At this point, I was barely moving and my legs should NOT be in so much pain and knotted. I realized that this was most definitely not overuse since I barely moved. I was doing an estimated 500-2000 steps a day. Most of my time was spent sitting or lying down. The pain in my leg got worse and eventually evened out with my back and arms.

In between then and month 6 1/2, I had my wisdom teeth removed. A few months before this I was recommended a Night Guard for the “teeth grinding” even though I told my dentists many times that I never once grinned my teeth. I made it clear that I clenched my teeth during my sleep and around the time I wake up (which is where the Tinnitus (ear ringing) comes from, I believe). I spent the money for the Night guard and, just like everything else, it didn’t work. I had 3 impacted wisdom teeth that I thought could have caused the clenching and decided to give it a shot. All 4 were removed without any complications. I was under general anesthetics which I believe could have been life threatening for something I thought I could have had. It may have been McArdle’s or some other metobolic myopathy. The clenching still persists, even today. I find it hard to scale my pain. Someone told me that the week after surgery was the worst they have ever felt. The night of my surgery, I was laying in my bed, on Vicodin, and estimated that my legs hurt 3 to 5 times worse than my gums. I believe it’s safe to say that Vicodin didn’t relieve the muscle pain. The pain from surgery was never worse than the muscle pain. Speaking of which, is usually worse in my forearms, hands, upper back, neck, lower legs, and feet. I would say the muscle pain these days range from 4-6 out of 10. It used to be 2-3 and then slowly increased in pain as more of my muscles started hurting.

Around month 8 I saw my Rheumatologist and he was the one that believed I had McArdle’s or some other metobolic myopothy. He did the usual strength tests that all the doctors I see do. They have me squeeze there fingers, push against there hands with my limbs, and sometimes walk in a strait line. I always pass these tests. He also tested me for Fibromyalgia and is sure that I do not have it. He also stresses that this is most likely not a form of stress or depressions since the pain is worse with exercise. I have to agree, but also because I don’t feel stress or depressed to the best of my knowledge. I also told him that I was recently getting kidney pain for about 3 minutes at a time about once a week. Sometimes I would get the pain 4 times a month and then no kidney pain for 2 or 3 weeks. Recently I haven’t had it much. The kidney pain is also not excruciating.

That brings us to the EMG. Which was 2 weeks ago. My EMG was done at PennMedicine. I asked my doctor of I had any signs of muscle damage. She said since I wasn’t urinating a brown color, and the EMG was good meant that I had no muscle damage. I was pretty happy. Over the past two weeks I’ve been playing a little bit of piano and solving some Rubik’s Cubes I’ve been neglecting. I’m a little bit happier because of this. I used to just work and sit really still. I just called my Rheumatologist today and he looked over my EMG. He was pretty avid about the McArdle’s Disease and I don’t blame him. The muscle pain could have made him suspicious, but the kidney pain I was having may have lead him in that direction. I plan on calling him back tomorrow and letting him know why I disagree and what he thinks I should do.

My newest remedy is messages and I had one a month after the pain in my legs started again. My feet were the only part of my body that felt better. I went again last week and It didn’t really help. I have a membership and I will be going every week or two.

My final thoughts is that if this is a stress related condition, it should have gone away. Like I said, I can’t really measure stress, but my life should be a lot less stressful now. I have 1 job, instead of two, I’ve been saving a lot of money since I haven’t been going to therapy and the doctors 3 times a week recently.
I have thought of the possibility that the combination of stress from work, the death of my grandfather, and the death of his van, could have been enough to start the symptoms, as well as the physical stress from work and piano. But I am far from that point in my life. That was about 2-4 years ago. I started getting pretty bad symptoms 10 months ago, which was a better time in my life than the previous few years. Since then my life has been getting better, all except for the muscle pain which is THE ONLY thing I worry about now. Could it be possible that the symptoms come from stress and then the stress switch from being about my life to being about the pain? I do think about the pain every day (It’s hard to ignore when I feel and hear it at all times) and before recently, I didn’t really do a lot of the things I enjoy. I’m certainly not as happy as I was a year before. I love playing piano, programming for fun, playing video games, and all that. Now, I have no problems, other than the pain stopping me from playing as much piano as I want, but the condition seems to get worse every month. The pain is worse in my back, arms, and neck, the more I use my fingers and hands. If the pain went away, or if playing piano didn’t make it worse, I would be the happiest person alive. I don’t think I’m depressed either. Anyone in my position wouldn’t feel as happy as they should be.

To conclude, I will mention my family health history to the best of my knowledge as well as some hypothetical situations:

My father was diagnosed with Diabetes a few years ago and my cousin has had something similar to me. He is a student at MIT and writes a ton of papers as well as played Cello. His arms are the only places that bother him, in all the same areas as my arms and hands, too. His tests were normal. like mine. The difference between him and I is that I have muscle pain everywhere. He can use Dragon Naturally Speaking to write his papers but that isn’t a good option for programming. He’s been dealing with his pain for about 6 years now and I’m positive if it was overuse he would be able to play cello and take an exam without being in pain. He barely uses his arms, now. The pain isn’t consistent for him anymore, but when he uses them for longer than 30 minutes, they start to bother him again. I predict this is what would happen to me if I laid in a bed for a few months to let my muscles loosen up. I may have no muscle pain at all. And on that last day of my theoretical bedstay, If I walked for 20 minutes and typed a few pages in Word, I would be right back to tight knotted muscles and pain. Some evidence I have of this is my glutes. You use your glutes when you kneel and when you get up and down from a chair. I know this because I never had glute pain until I knelt down on the floor for 7 minutes and rearranged some computer wires. The next day my glutes were on fire. I had no clue why until I realized it was from kneeling for only 7 minutes. It hurt when I got up from a chair, and when I sat down. The day after was half as much pain, and the day after, the pain went away (as far as I could tell). Right now, I estimate if I knelt for 5 minutes, my glutes would feel similar for about 3 to 5 days. I predict that if I knelt every day for 2 minutes, my glutes would hurt as bad as my arms and back consistently in about 2-3 weeks. I try everything I can to rest my arms and legs, but I have to work, and drive. It’s as if I need weeks to rest between workouts instead of 1 day and instead of lifting or running miles I walk to my car, or type on a keyboard for a few hours.

I know there’s a lot here, but I’m sure I still missed something.

If you read this all, thank you so, so much. I would love to answer any questions if I wasn’t clear. I’m sorry it was so long. I felt the need to be as thorough as possible.

Liked by crazy1too

REPLY

Update:

I forgot to mention that I stretch daily. I went about a month with very minimal stretching to see if it made a difference, and I couldn’t tell. I stretch regularly now just in case it does help. I stopped stretching my arms before my back hurt because it makes the tingling in my fingers worse. I usually stretch my upper back, neck, scalene, and my legs.

I also had an MRI before my back started hurting. It was in my lower, right forearm and hand. There was no sign of tendonitis or anything else out of the blue. I also had a few x-rays of my arms and my spine. My doctors told me my arms are normal.

My spine doctor looked at my x-rays and noticed that my neck is very strait, too strait. My right shoulder is also lower than my left, but that’s pretty normal I hear. I’ve also had clicking in my neck for the past 4 or so years. Speaking of which, I don’t remember noticing the clicking recently, so maybe it went away from my readjusted posture and ergonomics. I hear that a clicking neck is normal as well.

Thanks,
Dale

Welcome to Connect, @frankthetank112358.

That is quite the detailed message with symptoms and history you shared with the community. As you may know, the Connect community cannot offer a diagnosis. However, it is clear that you are a thorough person who does your research and that you are exhausting all avenues to find some answers or even just a lead. What I would like to do to start, is introduce a few members who have experience being strong advocates for themselves in a long search for answers.

Thus I’m tagging fellow members @kdubois, @predictable and @dawn_giacabazi who may be able to give you some insights in how to find answers. While they may not share your symptoms, they too have pursued care for symptoms that remained undiagnosed for a period of time.

Hi @frankthetank112358, I’m reading over the info you posted above, and I have a question. What medications were you taking with this started 10 months ago, and what medications you are taking right now?

Thanks for the replies @JustinMcClanahan, @kdubois

10 months ago I wasn’t on any medications. Now I am taking 300 units of Coq10 and 250 units of magnesium daily. I irregularly take Tramadol. I took it a few days ago and 4 times before that over the past month. I don’t like the side-effects as well as the sporadic nature of the medication.

@frankthetank112358, a few more questions…

• When did you start using the memory foam pillow?
• Do you have a difficult time waking up in the morning?
• Do you have fatigue during the daytime?

To confirm, you have historically received little-to-no relief from pain meds such as Tramadol, Vicodin, Meloxicam, Nabumetone?

I started using the memory foam pillow about 4 or 5 months ago.
I don’t have a problem waking up, but I do have fatigue, which is another thing I forgot to mention. I get light headed after doing certain stretches, or sometimes when I get up from a chair. I also get feint if I miss a meal.

You are correct about the pain medicine. My muscles get no relief from pain medicine. The Vicodin and Ibuprofen definitely helped my gums feel better after surgery, though,

@frankthetank112358, I think I can provide some insight behind one of the issues you have been experiencing based on my experiences.

I first went to Mayo in September 2015 after becoming increasingly more ill for 12 years with unexplained body wide pain; targeted, transient pain in my shoulders, legs, arms; GI pain; kidney pain; abnormal sweating; daytime fatigue; vitamin D deficiency; and much more. I had 20 doctors at home, and none of them could figure out what was wrong with me. As background, I also, throughout my entire life, received little-to-no relief from pain medications, especially heavy-duty, prescription pain meds; they would take a long time to kick-in when they did work, and they never lasted very long. I would also have strange reactions to other medications; not exactly adverse reactions, but definitely atypical reactions (for instance, with cold medications).

Prior to my follow-up December 2015 visit, I emailed my primary Mayo doctor asking if he would refer me to someone there for evaluation for drug hypersensitivity. Eventually, I was referred to their Center for Individualized Medicine for Pharmacogenomics testing, and Mayo figured out that genetically, I don’t properly-metabolize many medications. There’s a liver enzyme system in our bodies called cytochrome P450, and these enzymes are basically genes. These genes drive the metabolism of many of the toxins that enter our systems, some of our hormones, and most medications. We figured out that I was incredibly sick from being prescribed medications, for years, that I don’t properly-metabolize due to enzyme polymorphisms (my diagnosis is called CYP450 Deficiency), and ***this diagnosis explained why I get almost zero pain relief from prescription pain medications.*** (They also figured out that I don’t properly-metabolize many cold medications, GI meds, psych meds, cancer medications, endocrine medications, etc. Great info to know for my future!)

Given your historical response to prescription pain medications, you may want to consider having pharmacogenomics testing done. There are many companies out there that do it via mail order now and the prices have declined significantly. To have it done, the process is usually: your doctor contacts the company, the company contacts you, and the kit is mailed to you. I actually have a new kit sitting on my kitchen counter right now from OneOme, which is a Mayo start-up. I originally had nine genes tested a year ago, but the new kit tests 22 genes, so I asked one of my Mayo doctors to order it for me. Check out OneOme.com or Google “pharmacogenomics tests” or “PGx tests” or “pharmacogenetics test” to see a list of companies. The web sites for the various companies seem to always include very educational info for doctors and patients. (Note that each PGx company needs to be “certified” by each state for physicians of that state to be allowed to order. I live in NY and NYS physicians aren’t allowed to order genetic tests (I believe from any PGx company), but since my Mayo doctor is in Minnesota, a OneOme-certified state, he was able to order it and have it mailed to me.)

You aren’t taking a lot of meds right now, which is good, but having this genetic information might be helpful to you.

I asked about your memory foam pillow use duration because last August I came home from Mayo after being there for two weeks, and I felt great, but I started sleeping in my own bed again and within a day, my body pain increased… a second night in my own bed, and it was worse. Then it occurred to me: while my hotel room at Mayo had a regular mattress, my home mattress was a memory foam mattress. The odorless fumes from memory foam were making me sick. (I googled it and was surprised to see many search results came up about this.) So, my husband and I bought a new mattress, and my pain went away. Now, I’m not positive that this is related to my P450 polymorphisms, but I was recently exposed to memory foam again, and it happened again, so I know that I need to avoid it now. You might want to ditch the memory foam pillow and see if some of your body pain slowly goes away.

This doesn’t answer all of your questions, and there may certainly be more going on with you, but it might help get you on your way to finding some answers. I have had to advocate for myself a lot — including taking myself from Rochester, New York to Rochester, Minnesota several times –, and I know it’s exhausting, but you deserve to live a healthy, fruitful life. I can attest that pushing for answers absolutely saved my life. Keep pushing and searching for answers, it’s worth it.

@kdubois, Thanks for the information. I will try using my old pillow. The pain did start before I bought it, but I’m willing to give it a shot. The medication metabolization does would fit my character. I don’t think I’ve ever received relief from Ibuprofen or Tylenol for headaches. I just assumed that it was a ploy for money and the people who think it work had the placebo effect. Although I do believe the meds my oral surgeon gave me did help reduce the pain in my gums. Gums and muscles are very different, however, and I will be sure to mention that to my doctors.

Thank you so much!

@frankthetank112358 you’re very welcome!

I would actually remove the memory foam pillow from your bedroom. My memory foam mattress pain actually added on to the pain I was having from the P450 drugs in my system. It was simply an incidental finding that I don’t think I would have discovered if I hadn’t gone away from home for two weeks. Interestingly, my memory foam pain greatly resembles the pain I feel if I consume caffeine. (Somehow, I don’t metabolize caffeine correctly either.)

And with P450, tons of different meds (and supplements and foods) inhibit or induce many of the enzymes, making them work too slowly or too quickly when metabolizing other medications. (This is what TV ads are talking about them they refer to grapefruit juice.) So, if you are taking a medication and it works great for you, but take it a year later and it doesn’t work as well, it could be because of other drugs (or even foods or supplements) that you are taking. Even if you don’t have polymorphisms, each drug that is added or taken away from your regimen can change how your body metabolizes the remaining drugs being taken. Unfortunately, very few physicians have more than a rudimentary understanding of this, but the more people talk about it, and they more places like Mayo draw visibility to it, the more educated people will become. Pharmacists totally know about this, which is good.

@frankthetank112358 Wow & Hello!!!

I will start with saying that I think you’re right, some of the symptoms are not relevant or less relevant than the others. You certainly have more than one thing going on which can make it very difficult to get to the root cause.

I would like to lend a bit of experience with a bit of knowledge. I always recommend pharmacogenetics testing before taking medication or patience to have a difficult time finding the right medications to treat their symptoms. Here is a link for more information. http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp

Second… I am definitely not the type of person to head straight to the worst and work backwards but in this case I think it is necessary!!! My father-in-law had a lot of your symptoms in regards to your muscle pain numbness tingling, back, neck, hands, etc.. He was diagnosed the 4 person in the world according to Mayo Clinic Rochester Minnesota & the longest living patient. The symptoms developed slowly over many many years.
http://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/dxc-20267744
I am not saying this is what you have but definitely something to look into and rule out.

Have you have a thorough work up at male clinic?? Here is a link if you would be interested in a thorough work up and assessment/ second opinion. http://www.mayoclinic.org/appointments

I want to also applaud you and encourage you to continue trying to find the answers there is no better advocate for yourself than you!!

Prayers for answers
Dawn

@dawn_giacabazi

Very interesting. I’ve wanted to get an MRI of my spine for quite some time now, and I think this is a good reason.

As for seeing an expert at Mayo, I’m hesitant because I live in PA. I haven’t looked into this, but my father has mentioned it many times to me, which lead me to post to this thread.

Which type of doctor should I see? My rheumatologist is pretty good and has openings usually within 2-3 weeks. My only gripe with him is that he wants to send me to other doctors. The Neurologist he sent me to is really good, but he is way too busy. I won’t get an appointment with him for a few months and my Neurologist at Penn was extremely quick to mention chronic pain and send me on my way.

I’d love to go to Mayo, but it sounds expensive to travel and get a room. I’m a student with an internship, and I’m actively looking for a career. I also don’t want to take parents out of state for a few weeks. They would never let me go alone. Every appointment I have the three of us huddle into a tiny doctors office suit.

Also, thanks again for everyone’s advice.

@frankthetank112358 I completely understand and appreciate your hesitation. As a mother of 3 children it is very difficult to get away so we usually make it a vacation. Not much fun for mom but they always have a blast. Actually hotels are not bad if you take some time and look around and most offer they Mayo patient discount and shuttle services are usually free.

As for what type of md…. well when I went I actually saw a primary care who then referred me out to the specialists I needed. I have been there multiple times. My very first appointment I was referred to primary care since I had several concerns and multiple diagnosis. I saw Neuro, The Cardiothoracic surgery, physical medicine, laboratory services and pain clinic. And a whole slew of tests. My insurance covered all accept my 1 x year co pay ($250). They will work with you & your insurance. They are really great at getting things covered.

My step father was seen by neurologist, primary care. Physical medicine, neuro surgeon who ended up putting a Wick in the neck at the top of his spine. 10years later they put in a new wick. This slowed down the disease process.

Prayers
Dawn

(Absence of myoglobinuria does not necessarily rule out McArdle’s disease.) “About one half of all patients will have experienced myoglobinuria (dark urine) following intense exercise.”
http://patient.info/doctor/mcardles-disease-glycogen-storage-disease-type-v
“Oral sucrose (75 g) ingested 40 minutes before exercise improves exercise tolerance in McArdle disease.”
http://jamanetwork.com/journals/jamaneurology/fullarticle/795729 “Effect of Oral Sucrose Shortly Before Exercise on Work Capacity in McArdle Disease” by S.T. Andersen, R.G. Haller, & J. Vissing, JAMA Neurology, June 2008

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