Dx with fibromyalgia, possible MS?

[Lanimo]

I would like to talk about my symptoms/give a brief history and see if this seems like MS. my NP just changed practices, and my new GP said a lumbar puncture was only way to know. are there any earlier signs, before jumping straight to that?

I'm 27 female diagnosed with fibromyalgia, ADHD, hyper-mobility, GAD, and chronic TMJ issues.

I have had pain issues as far back as I can remember; going to a chiropractor as a teenager.
my TMJ issues started much younger.

I have food intolerances. it started with avocados over a decade ago, then eggs, then fish, and I cut dairy out this week. It is the worst pain imaginable when I eat, and the only cure is sensory deprivation. I curl in a fetal position, lights out wrapped a blanket and wait for pain to leave. pain medication helps, but for so long I didn't know what caused these episodes, so I had to tough it out.

while in a "flare up", I got blood tests done, showing I had no allergies to the food I was rejecting. I did have blood comeback high for one of my white blood counts. I had a colonoscopy and endoscopy resulting in negative celiac biopsy and removal of a polyp. I will need colonoscopy every 5 years now. also dx with IBS.

I have extreme cold hands and feet. painfully so. no matter what I do, I can't warm them. I can be sweating and my toes are frozen to the touch. sometimes all the way up me legs. alternately , I sometimes have painful pins and needles.

I had surgery on my wrist to remove ganglion cyst about 6 months ago, which brought on another "flare". the cyst was causing nerve pain, so it had to go.

the most recent sign toward ms was a numbness on my nose, down round the tip, on the left side . it was there for weeks.

I have had 2 c-sections, and both times I was put back in hospital after release for extreme pain and fever after, with no explanation why. I came out of my second C crying because I was in so much pain. they. had pushed a lot on my upper stomach, and it was horrible.

I also seem to take longer to take to spinal for c-section. I also don't go under anesthesia well.

I feel like I have a low grade fever often. if it gets into high 99+ i can't get out of bed. so much pain and fatigue. a little fever and it's like I have the plague.

so, chronic pain, SEVERE fatigue, food intolerances, icy hands and feet, facial numbing. also fever issues, plus fibro/ADHD/possibly dyslexic.

I take cymbalta  60, adderall 15 IR, and narco 325/5.

I have gone the psych-route. therapy for depression/anxiety issues. it was determined I wasn't bi-polar or anything similar that would manifest physically.

[PeninaD]

A lot sounds less MS and much more rheumatic in nature.  Sjogrens, Raynauds, and similar.  They are also some of the "invisible dieases" that sometimes takes a frustrating amount of time to get doctors to correctly diagnose.
For blood tests, you should definitely have Rheumatoid factor (RF),  ANA and Anti-SS-A (also called Ro) and Anti-SS-B (also called La) tests. I am sure that there are other specialty test for these things. Might want tear function and salivary gland tests to rule out similar rheumatic issues.

[essdipity]

I have to agree with the others that this doesn't really sound like MS. And you have a large number of issues that almost certainly aren't MS. Fevers, for one, and a high white cell count. These sound like an infection, and MS does not involve infections. Food intolerance also is not a part of MS.

Tingling in hands and feet and not elsewhere sounds like peripheral neuropathy of some sort. That can be caused by vitamin deficiencies and endocrinological disorders such as diabetes or hypothyroidism. There are a lot of diseases that cause this type of symptom besides MS.

Raynaud's disease would account for the icy hands and feet (and I'm wondering if it's related to the tingling in the same areas, if perhaps not at the same times). I don't know much about Raynaud's but I think it's a vascular issue.

I'm sorry that we've focused on what is very likely not wrong with you and not so much on what IS wrong, but we aren't medical professionals and so can only go by our experiences. I hope you can soon get to the bottom of whatever's wrong so you can get the right treatment. Good luck to you.

ess

[maxthecat43]

None of this sounds like MS to me, not even the vaguely neurological symptom (pins and needles), because it occurs differently in MS patients.

The cold extremities sounds like Raynaud's to me.  Even the pins and needles problems can be due to fibromyalgia, and this is also associated with fatigue.  

The food intolerances may well be due to allergies- etc. ADHD is unrelated to any of these issues, but the food intolerance could exacerbate this problem- as well as many of the other issues you mention.  I'd see an allergist, and maybe a gastroenterologist.  I'm not sure who to see for the Raynaud's symptoms, but even so- there's no real cure for it.  

You can do an elimination diet (easily googled) to see which foods are the worst for you.  Keep a diary of foods, symptoms- over time.  Take these to your appointments.  You may find that removing the food triggers helps to ease all the rest of the problems you have.

I hope this helps a little.
Tammy

[Lanimo]

thanks for the reply. I listed my boatload of problems hoping something would stick, like spaghetti to a wall. I'm desperate at this point due to the fatigue that seems to be consuming my life.

the fatigue is all consuming, and it is effecting my daily life, as well as my college performance. I'm typically in pain in my back, lower more often then not. I have pins and needles every day in my feet and hands in the morning especially.

I have the cool, tingling in my wrist and hands. I always associated this with nerve pain, as it is not an out word "cold".

I do get spasms in my muscles, sometimes unbelievable painful, sharp. I also get dizzy often, and have a hard time with memory. my short term is the worst. I can't do simple recall more than 2 or three numbers. I also can't remember order. example: catering, I was told to assemble a sandwich in a certain order so they would all be the same. I couldn't remember a5 step process. I had to have it repeated several times, then wrote it down. as someone who prides themselves on their scholarly achievements, I can't understand why my brain doesn't function that way.

so, I understand these might not be a sure sign either, but it was nice to be able to vent about my never ending pain. chronic anything is hard. I did thing the reaction to a fever was a sure sign. if you have any further advice for any of these chronic issues I would love to hear it. thanks again for reading and commenting

[kwarendorf]

Hi Lanimo - Welcome to our little group.

I agree with immisceo. LP]s are a second level confirming test for MS. First is the clinical exam conducted by a neurologist, preferably one specializing in MS. Second would be a complete set of MRIs; head and c-spine with and without contrast. If the first two indicated MS then an LP would provide confirmation. It is not required, nor is it a smoking MS gun.

In reading your history, the only thing that seemed MSish to me was the pins and needles thing. People with MS often list pins and needles among their symptoms, but as immisceo mentioned it tends to be in one location and be constant. Sorry I can;t offer any more help.

Kyle

[immisceo]

*excuse me. I lost the fact that you mentioned pins and needles. Of course paresthesia can be experienced with MS, but it manifests in very particular ways do to the damage in the central nervous system that causes it. It doesn't tend to travel or dissipate when someone moves or at particular times of day, states of mind etc. I'm not saying that's how you characterised yours, rather just for your information as you consider your symptoms.

[immisceo]

All a lumbar puncture can do is refine slightly what's on the diagnostic table, so to speak. They are looking for oligoclonal banding unique to the cerebral spinal fluid (as in, it's not found in the blood sample that's taken at the same visit). A result is positive leaning towards MS if there are 4 or more unique bands, though there is some discrepancy over the number needed for a 'positive'.

Some people with MS have no or minimal oligoclonal banding, so it's not a home-run test. It is part of most work-ups when MS is suspected, though it can be skipped if the MRI, clinical exams, and patient history seem clear-cut in favour of an MS diagnosis.

A neurologist could examine you and determine with more expertise than a GP what kind of testing is or isn't warranted, so I suppose getting a referral is a possible next step. However, the only things you mention potentially relevant to MS is the left-side numbness (or did you mean just the nose?) and severe fatigue. These things can have many other more likely causes. I wouldn't put my money on MS, but I'm not a professional.