Unusual Symptoms of MS

 

MS: Strangest Symptoms From Head to Toe

Extreme fatigue, clumsiness, weird prickly sensations, sluggish thinking, wonky vision -- these are classic and common first symptoms of multiple sclerosis, or MS. But the expected stops here. Damage to the central nervous system, aka your brain and spinal cord, is what causes these symptoms. That’s a wide range of functions that affect many different people. So it can show up in some strange and varied ways.

Trapped in a Bear Hug

It’s not a warm and cozy kind of hug. Called banding, this MS symptom feels like something’s squeezing you firmly about the chest and won’t let go. It can strike anywhere between your waist and neck, or just on one side. You might have pain or breathlessness. It happens when damage from the disease blocks or garbles the messages from your nerves. Spasms in the muscles between your ribs trigger the tightness. It often passes on its own.

Out-of-Control Laughing or Sobbing

Pseudobulbar affect, also called PBA or emotional incontinence, prompts random outbursts of tears or laughter that have nothing to do with how you feel. Nerve damage in the part of your brain that controls emotions can cause your responses to get all mixed up. You might worry about it happening when you’re in public, or in a serious setting. The FDA has approved a drug to treat PBA. Antidepressants can help, too.

An Itch You Can’t Scratch

It’s the itch that isn’t. A sudden, intense tingle crops up out of the blue, anywhere on your body. But there’s no skin irritation or allergy to scratch or apply rash cream to. This kind of itch doesn’t stem from your skin. Dysesthetic itching is a nerve-related sensation that passes quickly. It’s treatable with meds for epilepsy. Carbamazepine (Carbatrol, Epitol, Equetro, Tegretol, Tegretol-XR), gabapentin (Gralise,Horizant, Neurontin), and phenytoin (Dilantin, Phenytek) are a few.

Shocking Face Flashes

Nerve damage can trigger trigeminal neuralgia, a burning, stabbing, or shock-like pain in your cheek or jaw. It might fade fast or linger for a few minutes. Though rare, it can be a first symptom of MS. You might feel it come on as a tingle, numbness, or ache on one side of your face, like dental pain. Anticonvulsant meds such as carbamazepine, lamotrigine (Lamictal), or oxcarbazepine (Oxteller XR, Trileptal) can help.

Fiery Feet

Dysesthesia is an unpleasant “altered” sensation like burning, prickly pins-and-needles, numbness, and creepy-crawlies in any part of your body. For example, your feet might suddenly feel scalded, with no heat source -- or damage -- at all. Your brain gets distorted nerve signals, so it struggles to relate to something it recalls or imagines. Sometimes it comes up with some pretty crazy stuff. You can treat the weird feelings with nerve pain meds. 

Hard to Swallow

Swallowing isn’t as simple as it seems. The nerves and muscles in your mouth and throat must work with your brain. With MS, the muscles you need to do it can weaken. Mixed-up nerve signals and sensory distortions can make it hard to chew or control the food or liquid in your mouth. Or you might feel there’s something stuck in your throat when there isn’t. It usually happens at a later stage of MS, but it can show up earlier, too.

Spine-Tingling Shock

Lhermitte’s sign is really a symptom. It’s a sudden “electric” zap that shoots down your spine and legs. It happens usually when you flex your neck forward, as when you get your hair trimmed. (Another name for it is the barber chair sign.) Lesions in the cervical spine -- your neck area -- cause it. Lhermitte’s goes away as quickly as it comes, so it typically doesn’t need treatment.

Blurred Vision

Damage to the optic nerve (optic neuritis), which links your eye to your brain, can trigger something called Uhthoff’s phenomenon. This means your vision briefly goes blurry when your body temp rises. (Your other MS symptoms may get worse, too.) Exercise, hot baths, warm weather -- even hair dryers -- can all make eye-to-brain signals iffier than usual. It can help to take a cool shower, use a gel pack, and drink lots of cold water before you exercise or go out in the heat.

Optical Illusions

Another optical trick MS can play is the Pulfrich phenomenon. Optic neuritis triggers this one too. It’s a 3-D illusion caused by a conflict in your vision. Let’s say an object is headed toward you in a straight line. Instead, you might see its path as an elliptical orbit. An oncoming car might appear to swerve toward you, or you’ll miss a ball as you try to catch it.  A special filter in front of one eye can help balance your vision.

Sudden Spasms

Abrupt, brief spasms called paroxysms happen when electrical discharges fire in damaged areas of your brain. They might surge through your arm or leg, or the muscles you use to eat and speak. Although they can repeat several to many times a day, the bout usually ends within a few months. While scary, they’re not the same as seizures. You can treat them with antiepileptic meds, such as carbamazepine, lamotrigine, or oxcarbazepine.

Migraines

Migraines are sudden headaches that can last from several hours to days. They can sometimes be the first MS symptom. People with MS are twice as likely to have them. They can bring on nausea or make you sensitive to sound and light. This can keep you from your regular activities. People with MS seem to have family histories of migraine, so researchers are looking for a link.

Hearing Problems

What’s that you say? Rarely, hearing problems can be a first symptom of MS. It might have a link to swelling and scar tissue near your auditory nerve, which carries info to your brain. Plaque buildup on the nerves along this pathway can lead to it, too. These episodes usually improve, and permanent deafness is rare.

Vertigo

If you have vertigo, you may feel like you -- or the area around you -- is spinning. It can throw off your balance way more than just dizziness. You might also feel lightheaded or queasy from the sense of motion. It happens to about 1 in 5 people with MS. It can stem from damage in the same pathways that control your hearing and vision. Treatment can include physiotherapy, which studies how your movements affect it.

 

Some Things I Wish People Knew About MS-Related Fatigue

 

Devin Garlit

 

Of the many symptoms that plague those of us with multiple sclerosis, one of the most common is fatigue. It’s such a common symptom that the National Multiple Sclerosis Society estimates that fatigue affects at least 75% of those with MS.

Sadly, fatigue is a symptom that can be hard to comprehend if you haven’t actually experienced it. While the topic of fatigue has been covered a lot, I wanted to write something that could be shared with those who don’t have MS, those who may not understand fatigue. Basically, some things that I wish everyone knew about fatigue. So here we go!

MS fatigue is not just being tired

MS-related fatigue is NOT the same as being tired. You are tired when you’ve expended a lot of energy or had a long day. Our fatigue is not caused by losing out on some sleep or overworking ourselves (though doing either of those can certainly make it worse); it is present no matter what.

Fatigue makes simple tasks feel impossible

For me, when fatigue sets in, it feels like my entire body is weighed down. Like I’m submerged in an invisible layer of quicksand that makes every move extremely arduous. The simplest of tasks becomes incredibly difficult. I could be lying on the couch and just trying to reach for the remote control can seem like a near-impossible task. That’s something that I don’t think people understand. It’s not just that I’m too exhausted to go do something, I’m too exhausted to do anything. Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.

Expending all our energy

A common meme on the internet proclaims that people with multiple sclerosis expend 5 times as much energy as a normal person. While I haven’t seen a reference to any science behind that, it’s still a great way of explaining what fatigue feels like to us. It takes so much for us to do something that others might take for granted. If you have or know someone with MS, then you’ve no doubt heard about the Spoon Theory, another great description of what it’s like to live with MS that speaks specifically about fatigue.

No amount of sleep or rest helps

No amount of sleep or rest will help my fatigue. Maybe all I can do is sleep or rest, but that doesn’t mean that more of that will fix the problem. Remember, MS-related fatigue isn’t caused by something I’ve done, it’s caused by damage to my nerves and brain.

Fatigue is something I encounter at some point every day of my life. Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day. Many times it will hit me in the afternoon. It can last all day or for a few hours.

Fatigue is unpredictable

It can come on suddenly, which means I may have to cancel plans on short notice. Physically, in addition to feeling weighed down, my body becomes weak and tingly. That weakness leads to falls and also dropping things. While fatigue can happen to me almost randomly, some things are guaranteed to bring it on, like a change in temperature or stress. Fatigue is not just a physical issue, it makes my cognitive problems worse too. The fogginess, the confusion, the memory lapses that I experience because of MS all increase if I am dealing with fatigue.

An invisible symptom

Fatigue is one of those invisible symptoms we deal with, which means many of us have to deal with people, including friends and family, believing that it’s not a real issue. This leads to other problems like depression and loneliness. When we do mention it, we unfortunately often have to hear others say something along the lines of, “Oh, yeah, I’m tired, too, I understand”. I’m sorry, but you don’t. You have a choice in being tired; we don’t. There is perhaps no more infuriating of a situation than this one: when you discuss your fatigue and someone else says they are tired. Again, it’s not the same thing. I’ve been tired before I had MS and trust me, it’s different. The exhaustion I felt after running a marathon could not even compare to what MS-related fatigue feels like.

Difficulty making it through a workday

MS-related fatigue is a big reason why many people suffering from it end up leaving their job or why their performance begins to suffer. According to the National MS Society, fatigue is a big culprit when it comes to people with MS having to leave work.¹

It's absolutely demoralizing

An example of an all-too-common fatigue scenario for me is waking up with some big plans (for me, let’s say that means trying to clean the kitchen, maybe even just emptying and loading the dishwasher) and then being completely unable to do it. To have zero energy to be able to do anything and have to just lay there. It’s absolutely demoralizing to me and it happens at the very least once a week, often more. Having fatigue feels like having your life stolen from you, but you are still awake to see it go by without being able to partake in it. MS-related fatigue makes me a prisoner in my own body.

 

Advances in MS Treatment

  New treatments for MS are coming online all the time. Some are approved by the FDA, while others are still in clinical trials. See how they may help treat your symptoms.

 

Drugs May Help Rebuild Myelin

Two drugs, metformin (Fortamet, Glucophage, Glumetza, Riomet) and clemastine (Dayhist, Tavist), may help rebuild your myelin. Usually, metformin treats diabetes and clemastine helps with hay fever. Researchers found metformin can help myelin-making cells repair it better. Experts found clemastine helped with the speed of messages from your eye to your brain. Animal studies showed metformin can improve the effect of clemastine.

More research is needed about the effects on humans.

Pioglitazone May Prevent Myelin Damage

Experts are doing clinical trials with pioglitazone (Actos), a diabetes medication, in people with progressive MS. They want to see whether the drug can target immune system attacks on myelin. Pioglitazone may be a useful therapy to protect nerve fibers from more damage and even repair damage to myelin.

BTK Blockers May Lessen Nerve Damage

Bruton’s tyrosine kinase (BTK) plays a role in the survival of B cells, white blood cells that make antibodies. Some B cells are linked to MS relapses and progression because they attack myelin. BTK inhibitors (BTKis) target B cells that can do damage while leaving useful B cells alone. BTKis were first used to treat cancer. Now scientists are studying some BTKis – evobrutinib, fenebrutinib, orelabrutinib, and tolebrutinib – in clinical trials to find out how effective they are against MS.

ATA188 Targets EBV, May Help MS 

This therapy targets Epstein-Barr virus (EBV), which is believed to play a role in how likely you are to get MS. ATA188 involves T cells (white blood cells in the immune system) that target and kill cells infected with EBV. Experts are studying the proper dosages, safety, and success of this intravenous (IV) infusion and how it can help treat progressive MS. 

Stem Cell Therapy for Harmful Cells

This treatment uses or targets stem cells, which are cells that can turn into different types of specific cells all over your body. They can help your body repair itself. One form of stem cell therapy is hematopoietic stem cell transplantation (aHSCT). Experts use this to reset your immune system through chemotherapy. If you have MS, this will get rid of harmful cells that cause damage and swap them with healthy immune cells. 

DMTs That Can Change the Course of MS

Disease-modifying therapies (DMTs) can help control your MS symptoms. The FDA has approved different types of medication to treat and manage MS:

• Ocrelizumab (Ocrevus), ofatumumab (Kesimpta), and ublituximab-xiiy (Briumvi) target CD20, a protein on the surface of B cells. These B cells are white blood cells that have been shown to play a role in MS.
• Diroximel fumarate (Vumerity) lessens inflammation and stops nerve damage that may cause MS symptoms.
• Fingolimod (Gilenya) reduces the MS relapse rate in adults and children. It’s the first FDA-approved MS drug for kids.

Other DMTs That Can Change the Course of MS

• Ozanimod (Zeposia) can help with clinically isolated syndrome, relapsing-remitting MS, and active secondary progressive MS.
• Ponesimod (Ponvory) can lower the chance of MS symptoms coming back by more than 30%.
• Cladribine (Mavenclad) and siponimod (Mayzent) are other treatments that can lower your relapse rate if you have MS. They stop certain cells of the immune system from causing nerve damage.

Cladribine for Other Forms of MS

As mentioned, this drug already helps people with relapsing-remitting MS. The first trial of its kind is studying whether cladribine can help more advanced progressive MS. Experts are hopeful because it’s one of the few DMTs that can get inside your brain and spinal cord. That's why it’s so helpful for relapsing MS.

Cholesterol Drugs May Help With MS

Simvastatin (Flolipid, Zocor) is a statin doctors prescribe to treat high cholesterol. It may also help slow down secondary progressive MS. Some studies show that higher cholesterol levels are linked to worsened MS. Because of this, experts thought simvastatin might slow down MS progression if it lowers your cholesterol. But a more recent study found that the drug directly slows down the progression of MS, even if it doesn’t help your cholesterol levels.

 

From: WebMD

Surgeries and Procedures for Multiple Sclerosis

 

Medically Reviewed by C. Nicole Swiner, MD on March 02, 2023

Written by Shawna Seed

Because there’s no cure for multiple sclerosis (MS), your doctor will try to manage your symptoms and slow the disease’s advance. To start, you may take a combination of drugs and go to physical therapy.

If medication doesn’t work or has side effects you can’t tolerate, your doctor might suggest surgery or another procedure. You might hear some of these operations referred to as functional neurosurgery. This is a broad term for procedures that alter the way parts of your nervous system function.

Baclofen Pump

Up to 80% of people with MS have spasticity. That's when signals between your brain and your muscles get scrambled, making your muscles stiffen up. Spasticity can make it hard to walk, speak, and swallow. You could also have spasms that are painful or disturb your sleep. Eventually, it may limit your range of motion.

One drug that treats spasticity is a muscle relaxant called baclofen. If oral drugs don't work for you, you might get an intrathecal baclofen pump. (This approach is also called ITB or intrathecal baclofen therapy.) Your doctor implants a pump under the skin of your belly. It's attached to a thin, flexible tube that carries the medication straight into the fluid of you

To check whether the treatment is right for you, your doctor will do a test first. They'll insert a needle into your spine (called a lumbar puncture or spinal tap) and inject baclofen into your spinal fluid. After several hours, your doctor will know whether the medicine works.

You’ll need surgery under anesthesia to place the pump. That always poses some risk. Other possible complications include:

• Infection at the site of surgery
• A malfunctioning pump, which could lead to withdrawal symptoms when you suddenly stop getting the drug
• An accidental overdose of baclofen

Advantages of ITB include:

• Baclofen is more effective when it goes straight to your spinal fluid.
• Your body gets a steady dose.
• There are fewer side effects than when you take the medicine by mouth.
• Your doctor can adjust the flow of medicine to change throughout the day.

Deep Brain Stimulation

Tremors, in which your head, limbs, or body tremble or shake uncontrollably, affect up to 60% of people with MS. They can make it hard to eat or dress yourself. In severe cases, you might have trouble swallowing or speaking. Some people find tremors hard to handle emotionally.

This is a hard symptom to treat. Your doctor might have you try several different medications. If your case is serious or drugs don’t help, you might be able to get a procedure called deep brain stimulation (DBS).

In deep brain stimulation, a neurosurgeon puts electrodes in your brain. They implant a programmable device, a kind of controller, under the skin of your chest. A wire under the skin of your head and neck connects the controller to the electrodes. DBS sends electrical impulses that disrupt the brain activity that causes tremors.

DBS isn’t as effective for MS as for some other conditions. But it may still improve your symptoms. The risks include:

• A chance of brain hemorrhage or stroke
• Infection
• Problems with the device
• Headaches

While your brain is being stimulated, you might have:

• Loss of balance
• Tingling in your face or limbs
• Speech or vision problems

Rhizotomy

Some people with MS, less than 5%, have intense facial pain called trigeminal neuralgia, or TN. It’s often described as feeling like an electric shock. Simple acts such as touching your face, brushing your teeth, talking, or chewing might set it off. It can also happen for no reason.

If medication doesn’t relieve your TN, rhizotomy might help. In this procedure, your doctor destroys fibers in the trigeminal nerve in your head so it can no longer carry pain signals. Rhizotomy is an outpatient procedure. You’ll go home after a few hours in recovery.

Among the types of rhizotomy are:

• Glycerin/glycerol, in which the doctor injects a chemical that destroys the nerve
• Radiofrequency, which uses a special needle and electric current to burn the nerve fibers

Your pain might return when the nerve grows back, usually in 1-6 years. But you can get rhizotomy again. Facial numbness is a possible side effect. It's more likely if you get the radiofrequency version.

Other Procedures

Neurosurgeons can do other procedures that may improve tremors or trigeminal neuralgia.

Radiosurgery, despite its name, is not surgery. The procedure uses focused radiation to target parts of the brain or nerves.

For trigeminal neuralgia, it uses radiation to damage the nerve fibers. It’s an outpatient procedure, and you won’t need anesthesia. It can take anywhere from 4 weeks to 8 months to feel the full effects. It’s the least invasive procedure you can have for TN.

To treat tremors, a neurosurgeon will send radiation to an area deep in your brain called the thalamus, which handles sensory messages.

Radiosurgery is also called the Gamma Knife, CyberKnife, or X-Knife.

Gastrostomy

Dysphagia, or trouble swallowing, is more common among people with advanced MS. But it can happen to anyone with the condition. If the nerves that control your mouth and throat are damaged or weakened, you might find it hard to drink or eat.

The condition can be serious for two reasons. First, you might not be getting the liquids and nutrients you need. Second, you run the risk of choking, which can send food particles into your lungs. That can lead to infection. Your doctor might recommend a procedure called percutaneous endoscopic gastrostomy, or PEG.

For PEG, a surgeon inserts a flexible feeding tube into your stomach through an opening in the skin of your upper abdomen. It’s often an outpatient procedure. Your doctor will numb the area and give you IV drugs to relax you. Once the tube is in place, you can get nutrients and liquids through it.

Possible complications include:

• Leaking of stomach contents
• Pain
• Tube movement or clogs

https://www.webmd.com/multiple-sclerosis/ms-surgeries?ecd=wnl_mls_060724&ctr=w