Hi, sorry all. As you can imagine lots of stressful talks and a spike in my migraines have been going on. I’ll probably only be able to answer a few of your thoughtful responses at a time, bit by bit. But since this one is of a different nature, I wanted to answer the one about multiple sclerosis first.
I’m sorry to tell you this, and I truly hope that this isn’t your case, but it’s still possible that you have MS - because that’s how my case was. My main complaint was persistent head pain and that’s all. They don’t consider that one of the “typical” symptoms. And my MRIs were clean. It took proooobably 8+ years until a teensy bit of plaque showed up on an MRI, but they said that migraines cause lesions too. And that
IF I’d had MS for 8 years, my lesions would look much worse. But I kept insisting something didn’t add up, so a spinal tap was ordered. On a scale of 0 - 1, my O-bands were at 12! But my doctor still didn’t want to diagnose me, because my lesions were so insignificant - things didn’t match up to him.
So I made an appointment to travel to the Mayo Clinic and see their head of the MS department, Dr. Elizabeth Shuster. She is a very gentle and kind woman. She told me that whether I had MS was not in doubt. In her years of practice she’s noticed there’s 2 kinds of MS. The first and most common is people who get lesions first, and the symptoms follow. The second are people like me, who get symptoms first, then their lesions follow. She doesn’t know what the difference is between these two groups.
I don’t have optic neuritis even now, and my other symptoms they look for in a neuro exam are very mild (walking, squeezing their hand, feeling pin pricks, etc). I’ve been going to doctor after doctor for 10 years, so I know no one will be more helpful, nor will they declare me disabled. But my original head pain is worse all the time, and has bled down into my arms and upper torso. My hands spasm or drop things more frequently now. Sometimes a body part simply won’t do, or will resist, what I’m telling it to do. If that happens to be my legs, I’ll drop to the floor before I can fall. With my hands I have no warning, and will unexpectedly drop or toss things. I was also told I should start self-catheterizing regularly, but I have enough pain down there and I refuse unless I have no other choice.
We do plan to pursue physical therapy for the painful sex (that’s the same as a physiologist, right?). We also just bought a book which was recommended on every major interstitial cystitis website called “Ending Female Pain: A Woman’s Manual - The Ultimate Self-Help Guide for Women Suffering from Chronic Pelvic and Sexual Pain.”
For my disease modifying drug, Dr. Shuster chose copaxone because we’re open to life (it’s safer for pregnancy) and it’s less likely to cause headache. No flu symptoms either, just localized symptoms where you injected. The needle is fully hidden in the auto-injector, and they have an awesome financial assistance program… I really like it quite a lot.
I took TONS of lyrica, to no effect. But neurontin helped quite a bit. I take 1,600 mg per day. I take tegretol 200 mg 3x/day for burning and shaking. I take the tricyclic antidepressant amitriptyline 125 mg for neurological pain too. I have Lo Loestrin FE, and fioricet with codeine for migraines. A lidocaine 4% mixture for trigeminal neuralgia pain (it goes up the nose) and Lidoderm pain patches. I get occipital nerve blocks for occipital neuralgia. And lastly, oxybutinin HCL for bladder spasms. I have terrible neurological weariness or “lassitude” (It’s almost as crippling as my pain!) but I haven’t convinced my doctor to treat that yet because Ritalin is a controlled substance, and my insurance won’t pay for what he prescribed which was a narcolpesy medicine.
The best medicine is to offer it up. Not only your pain, but your frustration and helplessness and anything else that bothers you! I’m trying to get in touch with a nun with MS who wants to start an apostolate just for Catholics suffering, especially with MS. MS really is something you’d never be able to imagine what it felt like unless you also had to walk down that thorny path, because it really is unimaginable to become an old lady at 28. I hope this gave you all the information you needed. Please don’t hesitate to message me any time, for anything.
I need a break (I can’t do much at one time) but I’ll write to the rest of you soon. Thanks and God bless you for your concern!
<3
I know a bit more about it than the average bear. I was tested for it this year. I was told if I don’t have the typical "symptoms’ and absence of plaques on my MRIs, I don’t have it. I still am worried and I understand how you feel.
Not to get off topic, but how were you diagnosed? I know that there can be atypical versions of every condition, but there have to be several items to make a firm MS diagnosis:
- OG bands in spinal fluid from an LP.
- Lesions in the correct spots in spinal and cerebral MRIs
- Evidence of demylination from aforementioned plaques
- These and/or optic neuritis.
Nerve pain can be caused by so many things…that’s why I’m curious. Usually with MS, extreme nerve pain is accompanied by varying states of disability.
You seem to be able to actually get in bed, and perform with your husband (albeit it’s tremendously painful). Are you scheduled for a follow-up? What if you went to a different doctor? A physiologist can help you with movement and pain.
Have you been given any sort of medicines? Have you been able to respond to Lyrica or Neurotonin? Have you been given Copaxone or Acthar Gel?
Sorry if I come across as intrusive; I’m just trying to help in case you hadn’t seen these options before.