Update: Still Undiagnosed

[dahlfacepoet]

I need a hug from my favorite group of people in the world. Ready? HUG

Okay, that was what I needed. I am still undiagnosed and having trouble with my bowels. Is there anyone out there that has information on diseases that have both GI and nervous system involvement? I haven't gotten worse in the last year or so, because of my neuro symptoms, tremors, migraines etc. I have limited mobility now and daily migraines. I am running into problems with my current neurologist. He doesn't listen to my concerns and only treats me for my migraines. Then, when I was having hallucinations from topamax, he told me to stop it cold turkey, which is very dangerous. I have only seen him twice, but that's enough mess ups to tell me I need a new neuro.

I tried calling to switch to a different guy, who had good reviews, in the same office, but it wasn't allowed. I was crushed. There are so few neurologists in this city. Now I have to wait for a new referral and a new appointment. It will take months to get the treatment I should have gotten in the first place.

My GI has made it clear that if I have CD, it's isn't just Crohn's. It could be Crohn's and MS, or just MS or Behcet's Disease. I have a GI appointment on the 15th to beg her to get me in with a new neuro as fast as possible. I need a diagnosis. I need proper treatment. I need some relief.

So anyone have any information on GI plus neuro issues? Anyone want to know how funny it looks to fall over every time I bend my knees? I'm very good at falling and making it look like sitting. Is there anyone out there that has similar problems?

 

[Jim (POPS)]

I am so sorry you are going through all of this. I don't know much about your condition but I did want to give you a BIG old HUG. :hug: :hug: :hug:

I know what you mean when a Dr. tells you to stop meds COLD TURKEY and there is consequences. I was on Valium 15mg and Klonapin 1mg for over 5 years and the Dr. told me to stop them. I did and I don't have to tell what happen. I went to the ER about 4 times thinking I was going to die. I went through hell for over 4 months. If I could get my hands on that guy, well, it wouldn't be good. Sometimes they JUST don't know.

I pray that you get well soon.

Jim (Pops)

 

[dahlfacepoet]

Thank you Jim! It's rough. I'm sorry you had to go through that. I was lucky enough to research the med before it was too late and I started having seizures.

Thank you for the hug, I needed it. I've been having a hard time, lately.

 

[Maree.]

I don't have Crohn's but belong to the forum because it's something that's being explored with my son aged 10. However I can totally relate to neuropathic side of your issues.

I get migraines too and have Atypical Trigeminal Neuralgia (ATN) which is sometimes misdiagnosed as migraines/cluster headaches or TMJ disorder. MS is one of the potential causes of ATN. When my pain became constant & extreme, I saw two neurologist and they really weren't sure what they we're looking at.

My primary neurologist referred me to a TMJ specialist at a pain management clinic to determine the nature of my pain (referred for diagnosis not treatment). He said that due to their expertise in facial muscles and structure TMJ's we're much better equipped to determine the precise nature and source of facial pain than neurologists. The TMJ did a lot of poking and prodding of my face on the outside and from inside my mouth and determined that the pain was definitely neuropathic in nature which gave my neurologist confidence that we need to continue trying different type of anticonvulsents until we found one that worked.

It was only after trying several different categories of anticonvulsent that we found one that worked for me (Gaba analogues). Have you tried other anticonvulsents already? Did your neurologist suggest a new anticonvulsent to try instead of the topamax?

 

[bozzylozzy]

Hi dahlfacepoet :hug:

I have a type 1 chiari malformation.. this can cause similar symptoms to MS
Have you had an MRI of the brain and spine yet?

A chiari malformation is where the lowest part of your brain protudes (herniates) through the base of your skull and pushes against your spinal cord. It then disrupts the flow of the fluid around your brain. A typical sign of this condition is val salva headaches. (Extreme head pain when coughing, sneezing, straining etc)

This also causes me to have daily migraines.. blurred vision.. slight tremors.. being a bit unbalanced.

I really hope you get to see a new neurologist soon.. (I dont like my neurologist either) it was actually my urologist who ordered the mri due to unexplained bladder issues.

Another thing.. is that connective tissue disease (hypermobility type) is common in those with chiari. Because you have lax ligaments etc.. I am hypermobile. And I know that some connective tissue diseases can be related to CD. (Or can cause similar issues to CD)

Your GI mentioned likelihood of having CD.. have you had a colonoscopy?? Xx

 

[dahlfacepoet]

"val salva headaches. (Extreme head pain when coughing, sneezing, straining etc)"
Yes! I just thought that was a thing I had to deal with, it's the worst when I'm trying to poop! I haven't had an MRI yet, which I need so bad. I had one in 08 due to optic neuritis.

I had a colonoscopy, endoscopy, pill cam a year ago. I have an ulcer in my terminal ileum and a esophageal hernia. Original GI did not make a dx because none of my bloodwork confirmed crohn's. So he dx'd IBS even though I lost 70lbs. A eventually dumped him for my new GI.

I've only been on Topamax and Amitriptaline, no he didn't suggest anything else to start me on, which really irks me too. I'm a little afraid to go off the Topamax completely in the off chance it was helping at least a little and the migraine will be intolerable. I could actually hear the pounding in my head the other day.

 

[dahlfacepoet]

I also was dx'd with Sinus Tachycardia, which has sent me to the ER and scares the hell out of me.

 

[bozzylozzy]

Did you ever tell your neurologist about the val salva headaches?
I have had those pains for about 8yrs.. but always thought it was normal. So never told anybody! Because the pain would only last a few seconds. But was a very intense pain... like a crushing pain
It is worse now though.. I get it if i laugh or shout loudly.

Its horrible when you have to spend a long time on the loo.. feels like ill pass out. But its only when I mentioned the pains to my husband.. he said "no thats not normal" haha

It may be worthwhile centering on those pains when talking to your new neurologist.. as those symptoms alone require an MRI
What is sinus tachycardia?

 

[dahlfacepoet]

Heh, I just assumed they were normal too. I really did almost throw my laptop across the room when I read that. It is a very intense pain but lasts only a few seconds. I close my eyes real tight until it is over. Okay, got it, having horrible pain when you sneeze is not normal, who would have thought?

Tachycardia is a fast heart rate, above 100bpm.

 

[Maree.]

I think your right to change neurologists it seems odd to stop a medication due to side effects (not change in underlying symptoms or condition) and not have a treatment plan for what to try next.

 

[dannysmom]

Danny has headaches (~2 years straight) when he was at his worst (2 different times)... not migraines though. We never found meds that helped. It felt a bit like high pressure in that sneezing would hurt too. It got dizzy easily and had trouble concentrating. Each time he had those headaches, his serum ammonia levels were high.

 

[Cat-a-Tonic]

Hi Dahl! I can't add much to what was already said, but I wanted to give you a big hug like you asked for in your initial post. I also wanted to mention that Allieinwonder has recently been diagnosed with Behcet's. She doesn't come around the forum much these days, but you mentioned Behcets, and I'm hoping that if she sees this thread then she might be able to give you more info. I see that you've already found her thread where she talked about her diagnosis so hopefully that's been of some help to you.

 

[bozzylozzy]

@dannysmom - im sorry to hear your son has these other symptoms too.. I get dizzy really easy and breathless aswell. What are serum ammonium levels? Ive not heard of that before..

If you or dahl ever get chance to read up on chiari.. there are many symptoms that are linked to it. Its a lot more common than people realise and generally manifests symptoms in late childhood early adulthood (when you skull and brain growth slows down and settles)
There is a lot of scary stuff.. BUT just like Crohn's.. there are mild to severe cases. And many people dont ever have problems with chiari.

If anyone ever wants to talk about it, feel free to message me. Equally if anyone reading this has experience with chiari.. please get in contact too!

 

[dahlfacepoet]

thank you everyone. My migraines show up usually in the afternoon around 3 or 4, I have a hard time focusing. With the tach I get really light headed when I stand up and then I get a valsalva headache too for a moment. I haven't found much relief for it. I can take the edge of it off with a little bit of coffee or tea which will help me function for the rest of the day. I have a sensitivity to sounds then and I have a type of synesthesia that makes me feel sounds and some are painful, it gets worse with when I have my migraines. I have sumatriptan for it, but they are so expensive and they don't usually work and I hate how they make me feel, I've been trying to use them more lately though. What do you all do for your migraines?

dannysmom, that's awful for your son. My brother and I both suffered from headaches since we were little, but then they went away for a while when I turned 18. They came back with a vengeance.

Hi Cat, thank you for the hug. I need you all. It's am so excited she was dx'ed with Behcet's, I been researching it since November and I fit all the symptoms! I always thought we had similar symptoms. Maybe it sounds weird to be excited, but it makes me hope that I have a doctor (who sounds like she could be German, btw) that could be on the right track.

 

[dahlfacepoet]

bozzylozzy, Chiari is interesting, I'm a poet, hence the name, so when I can't get to sleep I think of poetic ways to say things and I was imagining what chiari looks like. Then I had a dream that I freaked everyone out by comparing it to a corkscrew.

I just wanted to let you know you had an impact on my dreams last night. I do want to learn more. Are there any particularly good links you have? I did a quick search last night, but it was hurried.

 

[Cat-a-Tonic]

Dahl, I was really excited for Allie too, although from her more recent facebook updates she still isn't doing very well. I hadn't heard of Behcet's until she got diagnosed, I still learn something new every day from this forum! It's not weird to be excited, I'm still undiagnosed myself and I would be super excited to finally get somewhere with a diagnosis. I've been planning on throwing a big party if/when I do finally get diagnosed, ha ha. So no, it's not weird at all to be excited, I would be too. I hope you can get some answers and also some proper treatment very soon!

 

[bozzylozzy]

http://www.nhs.uk/conditions/chiari-malformation/Pages/Introduction.aspx

Whereabouts are you based? Majority of the stuff I find online are american sites. But the NHS have only recently added a page describing it.. (the link above)

Like I said before.. this condition has varying degrees of severity. Type 1 is the one I have (one diagnosed in adulthood mainly) other types are apparent from birth.

I have never thought about what it looks like.. but im not that creative haha
Dont scare yourself by reading too much into it though.

 

[dahlfacepoet]

Cat, Behcet's is tough, from what I understand, there is no way to stop the attack or to achieve any kind of remission. The treatment plan is to make the symptoms manageable and liveable for the patient. I hadn't heard it before my GI brought it up the first time we met. I even got a 10 day trial of pred Cat, can you believe it? Yes! Party Time! I think we all deserve a party. It will put those sweet 16 girls to shame. No one can party like a spoonie who just got her dx. Actually I'm not sure about that, I haven't been to a party in a long time.

 

[dahlfacepoet]

I'm in the SW States, Bozzy. For some reason that was the first thing I thought of when I learned what it was, what does it look like.

I'm interested also because I want to do a quick article about it for my blog. I want to do gain some attention for lesser known diseases, like Behcet's, and symptoms, like Uhthoff's syndrome. If anyone has suggestions for me I'd love to hear them.

 

[bozzylozzy]

I find it really interesting to learn about different conditions.. the human body just fascinates me. But its also upsetting to read about what some people have to cope with

You mentioned having a pred trial, how did that work for you?

 

[dahlfacepoet]

More about what I remember about Behcet's;
It causes ulcerations all over the body, so it can mimic IBD for obvious reasons. It can cause them in the brain stem and spinal cord and any system. There are some people that only get skin lesions and mouth ulcers. There are people who have no spinal cord involvement. It varies greatly from person to person.

It is very rare in the western world. Here it is more common in women than in men. In the eastern world, however, it is more common along the silk road. It is more common in men than in women there. There is no blood tests for Behcet's disease. It is diagnosed based on a criteria. More common in the east is a skin test where the patients arm is scratched with a needle, if a bump forms on the wound, it is indicative of Behcets.

 

[dahlfacepoet]

Bozzy, I loved learning about conditions since I was a teenager. Maybe there was something in me that knew something wasn't quite right, I was hoping to find something like me.

I saw a rheumy, due to my joint pain, a year ago and all the blood work and xrays came back negative, surprise surprise. So I haven't been back since.

My pred trial was amazing. I was oddly high the whole time (well I'm already high all the time, but a steroid high) but I ate food. Glorious food, sometimes 3 meals a day like it was nothing. I had energy and I was so sad when it ended. Then my body broke. It felt like it was broken, every bump and move hurt, like I was covered in bruises. I don't what that means, because I haven't seen my GI since, but I think that means I respond to pred.

 

[Cat-a-Tonic]

My pred trial was very similar, Dahl! I tried it about 3 years ago, in the middle of a bad flare. I saw a different doctor than my usual GP, and he told me I have IBS and that I "look depressed". I was insulted and so done with not getting proper treatment, so I put my foot down and demanded pred. He put me on 10 mg for 5 days, just to see if it did anything. Those were the 5 most wonderful days! "Euphoria" is a listed side effect of pred, and I got that one for sure. I felt so fabulous, like a million bucks! Music sounded better, my symptoms disappeared, I could eat, I felt like dancing all the time, I had tons of energy, and I'm pretty sure I had super powers during those 5 days. It was nothing short of amazing. And like you said, at the end of my pred trial, my symptoms all came right back with a vengeance. That part was horrible! So I totally feel for you, what extreme highs and lows these illnesses can cause us to experience. I went from bad flare to superwoman to worse flare in the span of one week.

And yes, it definitely means you responded to pred if you felt like that and had the worse rebound symptoms after the trial. The bad doc who prescribed pred to me said that he felt I have IBS and depression, and therefore he thought pred wouldn't do a thing for me, but he was willing to entertain my whim that I felt like it would do something. When I saw my GI after that episode and explained to him how well pred worked, he started taking things more seriously. He went from "I don't know" to "probably some type of IBD" and was willing to put me on IBD meds which in turn got me into remission. Hopefully your GI takes you more seriously as well and is willing to put you on better meds or even a longer run of pred. When do you see your GI again?

 

[dahlfacepoet]

Yes Euphoria was right. The pain did quite go away and the doc said I shouldn't expect it to. But I just was so, insert walking on sunshine montage here. I could go do things, we went and had coffee at a coffee shop and played cribbage like we used to. It's was incredible.
I see her a week from tomorrow. She put it a perfect way when I saw her the first time in November, "it wasn't that they didn't find anything, they just don't know what they found." She saw my ulcers and pointed out from my pill cam that I had a hernia in my esophagus and my previous GI hadn't even told me. She saw I even did have some not normal blood tests.

I don't know where she's from but I'm guessing she wasn't educated in the US and that might give her an edge and what I need to get diagnosed and also why she'd know about Behcet's. I actually excited for a dr appointment for the first time in years.